Leave a comment

The Thought Wars

We have, for some time, been fulfilling the prophetic phrase spoken by Jesus when He described the end times and how one would know when it was here.  One of the event was the new idea of  “wars and rumors of wars”.  As a child I was very intrigued by what the heck a “rumor of war” meant.  A war is the most outward expression of anger and failed communication right?  It cannot be a rumor.

Enter what I now call the Thought Wars.

The thought wars have been around since propaganda became the norm but got jump started in our century with the Cold War.  Wars on paper, wars fought in secret, in posturing, in propaganda.  Now it has gone into the deepest recesses of our mind.

At least with a real war ones inner most expression of self is intact.  The action of fighting is empowering, an outward expression.  In a typical war there is a “front”, a place where the two sides meet for the clash.  One knows where the front is.  One can hear it for miles away.

With Thought Wars it is the opposite.  The war takes place in our minds.  There is no front line.  The shells are the lies, half-truths and total bullshit blasted at us from the time we wake up until the time we go to bed.  Where truth is not the goal at all.  Where the goal is something entirely different.

We are now in an era where Information drives Thought.  And the power of Information is in the hands of the few.  For convenience we have chosen to enslave our minds are no longer our own.

In order for me to get even an inkling of what is really going on I have to go to outside sources away from mainstream media.  I look for similar threads and for the history to clear my mind of the propaganda and lies.  The sites in contention with established media.  And charitable sites working around the world are also great sources for what is not being reported.  The horrific stories of religious persecution and mass slaughter are only the beginning, I fear, as we succumb to the deception that we can all live happily in a global environment once we cast off morality.

The saddest part is that we think we know so much yet we have never known so little.   We should be looking to the past as the past is the best predictor of the future.  But we have lost our way and our disdain for those who have come before dictate that we are doomed to repeat their failures.

If one knows nothing else about history one must at least keep one crucial item in mind:  the destruction of society and culture is always preceded by a destruction in moral values and actions.  And that starts with what is morality.  And what is fundamentally morality, what causes nations to fall, is found in the Bible.

The Bible tells us to put on the armor of God to ward off the powers of darkness, inherent in all men’s souls.  And now this darkness is entering our minds.  Be aware, be vigilant and KNOW YOUR BIBLE.

Ephesians 6:10-18

Be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms.13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.

Advertisements
Leave a comment

Google Translate Predictions

This article appeared today in WND: https://mobile.wnd.com/2018/07/is-google-translate-hinting-at-end-of-the-world/

It briefly discusses a phenomenon of prophecy in the google AI software.

I checked to see if this was correct and I got the same results on maori translate of dog typed 19 times as shown below.

Google translate of dog in Maori

 

This is a wake up call both for the concerns with AI and the world events that are proving Bible that prophecy is rapidly moving toward the “last days”.
But what can this mean?  The problem is that we dont know how the mind of AI will develop.   We do know that when AI’s were allowed to communicate they created their own language and locked out the developers.  Now it appears that they are creating a prophetic language.

My hypothesis is that google AI is now actively comparing world events to all prophesies written in all languages, synthesizing the timelines and drawing conclusions.

If you want to replicate the above you will need to do it quickly as google is now aware of this and is frantically trying to “Fix” it.  But people are typing in other combinations and getting hits as well.

It seems that AI prophesy is here.

Leave a comment

Getting Stuck on the Loo

I have come across the darnedest predicaments ass part of my war journey with Ehler-danlos and assorted afflictions.  The most recent being getting stuck on the loo.

Hmm…you say. Getting stuck on the loo? you say (as if repeating it could make it any less incomprehensible, right?)

You mean, Getting stuck IN the loo right?

Nope.  I dont.

I cant get up from low seated positions right now because I injured my arm getting out of bed then dislocated the same arm washing my back in the shower then blew out something in my knee going down a step.

I wish each of these had an adventurous story to go with them because then I could perhaps brag blog about it.  But no, I was not in the middle of heated sex and fell off the bed.  I was not washing my lovers back in some twisted experimental position.  And I wasnt trying to save my puppy from falling down the stairs.

So I am left with blogging about how I cant wipe my arse and getting stuck on the loo.

But to others who secretly have the same problem, IE:  the getting stuck part, I will make up give you three awesome fixes, because isnt that what all blogs need to have now-a-days?  A number to keep people’s attention?

Ok………slight detour for a moment.  I have been off blogging for a good long while except for now and then when I post depressing stuff about all my medical conditions and I have not been reading anything much.  But I come back to a wordpress that is now “Discover” and boring as hell.  My initial impression is that the fun appears to be gone from blogging but perhaps that is just my erroneous assessment.

Advert done, back to My 3 Method Approach to How to Get off the Potty with Just an Arm and a Leg.

  1.  First of all, stop trying to get off the pot if you are stuck and in pain.  Dumbass, get a higher seat.  They will come in 2 days from Amazon.
  2. Note to self……..
  3. Second, (do I have to put second or do you know it is second?) Oh wait, I need to bold it or italics it or put in more white space to capture attention right?
  4. How do you stop these fucking auto numbers?
  5. Fuck that
  6. SECOND, dont do the poo you do when alone.  Get a helper.  Yup, Im going for the gold here but who’s shitting.  Wait, no, who’s keeping score.
  7. Or something like that
  8. Third, go to Physical therapy and Do your damn exercises.  Oh, wait, that is supposed to go into my calendar reminders, but hey it works here too.
  9. Forth, ok, I just thought of one which messes up my title.  To heck with it all as I think the only one worth keeping is number one.  All these numbers are making my head ache.
  10. Lastly, because I just dont know the number, use the water tank with your good arm and your good knee to haul yourself up and give a good yell when you begin to get up to spur you on.
  11. And, finally, when you see all your 12 doctors, tell them in explicit detail how bad it hurts and watch them look at you in puzzlement, pass the buck and then charge you 500 quid.

Works every time…….

 

 

Leave a comment

My Immune Deficient Life

My medical story is long, convoluted and complicated.  I have multiple disorders linked to both genetic and immune dysregulation along with secondary disorders and complications.  I am in the high risk category of immune dysregulation, in that I have had cancer, I have at least two autoimmune diseases and I have an immunodeficiency.  What this means is that I may continue to develop other cancers, other autoimmune diseases and a condition called SCID as long as whatever is causing my immune dysregulation continues to progress.

I started with infections at the age of three weeks, and I lived at the ENT specialists’ office for the first 12 years of my life.  Because I was eventually found to have a congenital problem with my right ear, no one thought to test me for immune deficiency, and in the 80’s testing was rudimentary with few options if a disorder was found.

When I was around 12 my infections improved until I moved to college, but I immediately developed two conditions thought now to be inflammatory conditions: bipolar depression and juvenile fibromyalgia.  It is of great interest to me that they both developed at puberty.  The work of Jarrod Youngers is making great inroads toward the acceptance of fibromyalgia as a disorder of brain inflammation, and I hope that a cure will be found in my lifetime.  Bipolar disorder is finding less ground for acceptance with the psychiatric community, partly because they would have to change their current model.  There is much I could say about the scientific stupidity of that last sentence, but this is not a post about being snarky.

I did notice that whenever I moved to a new location or changed jobs I got a series of infections.  My worst bout was when I started at a pediatric hospital.  I had 8 bouts of gastroenteritis in a 12 month period.  I grew almost paranoid…. little blighters kids, big germs!

Chronic infections resumed in college, and I was constantly ill with something, especially sinopulmonary infections, the hallmark of immune deficiency.  But again a reason was found: I had a deviated nasal septum, a complication of weak connective tissue in EDS sufferers.  So again no one thought to look into the frequency of infections.  And my ear problems in childhood resumed in my 20’s leading to perforated eardrum and the need for a third tympanoplasty (eardrum replacement).

In my 30’s I began with odd symptoms:  open sores and crusting behind my ears and on my scalp, fatigue, sun sensitivity, recurrent fevers, plantar fasceitis.  I was very ill with a form of hepatitis while pregnant with my daughter that resolved spontaneously when I was induced early.  Unknown to me, my disordered immune system was developing autoimmunity, and one morning I got up and almost fell from the explosive pain in the back of one knee.  I asked my PCP to do inflammatory labs and my inflammation levels were very high.  That was the start of a year of searching.  The rheumatologist officially diagnosed my ignored fibromyalgia and thought  I had Reiter’s syndrome.  And I was diagnosed with something from every specialist I saw: severe sleep apnea, gastritis and GERD etc.  Gradually the horrible pain went away and I got a clean bill of health.  Six days later I woke up with sausage digits and horrific pain from head to toe.  I was in some other crisis, of what no one knew.  This time the rheumatologist was not so cheerful.  But he did not know what was wrong so he called it “inflammatory polyarthritis”, an umbrella category for inflammatory disease that didnt fit into a known condition.

I did not improve for 3 years.  Then  I developed triple negative breast cancer and the chemotherapy helped both the fibromyalgia symptoms and the inflammatory pain, until I started a chemo drug called Taxol.  I had horrible reactions and it wrecked my nerves.  I could feel them dying with each infusion, as my arms and fingers turned beet red and hot as fire.  The pain returned and I have not had a pain free day since.

I began to look for reasons for autoimmune disease and cancer and found immunodeficiency syndromes.  And I thought that this was probable but I didnt want to investigate further until I started with long bouts of skin inflammation/rash/infection and sinopulmonary infections.  So I asked to be tested.  My initial tests showed a moderate IgM deficiency, which usually is not too much of a problem.  The immunologist decided to rule out other immunodeficieny conditions and discovered that I had profound antibody deficiency.  In other words, I do not make antibodies to certain common bacteria.  I have an atypical variation of CVID (Common Variable Immunodeficiency) and I require immunoglobulin for the antibodies to keep me healthy.  I am at risk for progression to SCID (severe combined immunodeficiency).

I was strongly advised to begin immunoglobulin, a very expensive product made from batched human product.  It contains antibodies, thus giving me a passive effect like a newborn has with mom’s antibodies.  The cost is immense, so it is restricted to  immunoglobulin G and severe cases of antibody deficiency.  I started out with IVIG once a month but the side effects were rather awful.  I had body aches and migraine for 3 days and despite changes in the type of IVIG I had to sit in a chair for 6 hours and have it run at a snail’s pace.

That got old real quick

But there is a form of immunoglobulin that can be infused under the skin, and I decided to do that once my immunologist agreed that IV was not the best for me.  It involves inserting several needles and infusing about two ounces of immunoglobulin simultaneously over about 2 hours once a week.  So far not bad outside of some itching.

I have recently developed an autoantibody to the cells that make insulin and GABA called GAD65 autoantibody.  This can cause autoimmune diabetes, neurologic disease and cancer.  And again no one knows what to make of it and the level is impossible to analyze as I take medications that lower autoantibody levels (immunoglobulin and methotrexate).

So I am back to square one, almost

As usual, neurology wants rheumatology to now get involved in the workup and rheumatology says they know almost nothing about GAD65.  Hmmm…..I guess once a doctor gets out of college they are not able to read but I am?  I am rather tired of educating people on stuff they can look up easier than I can.

This all makes me feel like a hot potato….

Leave a comment

“Catcalling” Paul Watson

I secretly have the hots for the enigmatic Paul Watson.  Mr Paul Joseph Watson is the editor-at-large of infowars.com and the-guy-you-love-to-hate on his no-hold-barred video blogs.  No matter that I am old enough for him to have nursed from my boob, or that I am probably related to him in some purvy way, having hailed in past ages from Yorkshire (Paul my surname is Brook, wink wink) but…..

Hot is hot and he is….well, sizzlin’, smokin’ HOT sausage on a stick

Recently I made an impulsive comment on his facebook page:  “You are so bloody gorgeous whatever you say has me hanging on to each word with my tongue hanging out.”

Yes, I am the brave unsung hero of uncouth one liners.  But it didn’t sit very well with me.  It was just a true and heartfelt spur-of-the-moment cheeky compliment, wasn’t it?  I intended it to be.  But this man is not putting himself out there for the world at large to vitrify so he can be summed up in one word with three letters:

♥ HOT ♥

I mean if it were a proper compliment, or a cleverly worded compliment oozing with charm perhaps I could forgive myself.  But Paul Watson has made a name for himself by what is in his head and in his heart, and yes he has one,  for no one could continue to point out the egregious hypocrisy of this age with such passionate stamina without one.

And I stripped all of that away from a man who has been inerrantly pointing out the levels of cultural and societal stupidity.  Opponents of his agenda might applaud, stating that I have summed up all he can ever be, another pretty package with a schtick.

Feminists would add that not even his package is pretty.

I am not a feminist, and this is not about his package.

If Paul Watson were a model or reality star then I wouldn’t feel as guilty about what seems like a demeaning gender neutral catcall.  After all, they are in the beauty or social business and their looks (for good or ill) are often part of what they do.  But reporters are serious people doing serious work.  Whether I like or dislike that “Paul” has to say, I respect his bravery and I believe in what he is doing:  the mouthpiece of  what often seems like a lone organization stripping away the trappings of society to uncover the greed, shame, pain and lies.  No matter the bluntness of his manner, this is a calculated persona as hearing a Brit ‘tell it like it is’….well,  now hell may freeze over.

So here he is, risking life and limb battling it out with very powerful people to get at the heart of the matter, and I state the obvious.  But didn’t I just prove what Paul Watson is all about?

Exposing our DOUBLE-BIND society

A double bind is when an individual or group receives two or more messages that conflict and the one message negates the other.  Schizophrenics are more likely to have had a mom who used this tactic to elicit obedience.  I believe our western sub-cultural hypocrisy (my phrase) is a powerful form of double-binding and one that we may not see under the spell-laden layers of power, money, glamour and sex.  The Power of Sexiness has “sold” and “sold out” our generations, becoming more and more blatant until the weave is tighter than that finest tweed ever sold in Ye Merry Olde England.  It has stripped away our finer natures.  And I accuse these sweltering layers of cultural hypocrisy of  making me think first of Paul Watson as “hot”….. and as an afterthought a hearty huzzah for his “on fire” mind.

I used to think that this was a recent problem.  Yet some of the most powerfully evocative books I have read were from ages past and they didn’t have a whiff of anatomic sex in them.  I challenge anyone to read Georgette Heyer’s Regency novels and not come away unaffected by the lure of the well turned phrase.  Do I even NEED to say Pride and Prejudice….mic drop….

A word of reverent enthralled silence please…..

While we have senses we will find the sex in sexy, it is how we view it and what we do with it that matters.  And underneath the heart of sexy are qualities that must be maintained or we are all complicit in these acts of sexual harrassment, aggression and assault that are now under the lens of exposure.

I unthinkingly demean a good man as “HOT” but on afterthought I feel bad about posting it because Paul has made me think a little differently about the hypocrisy associated with  “feminism”, “harassment” and “power” that I stopped and felt bad.  But I am powerless so it isn’t the same, right? As a nameless individual I have the right to sum Paul Watson up as “hot” on social media?  But then, doesn’t that make me powerful?  Because I can?

At issue are the finer points of who can get away with what, and what is considered funny vs demeaning.  I think Paul Watson would get a huge kick out of a woman calling him hot, no matter the age, but I don’t know this to be true.  I never said I had a high Executive Function IQ.

If I had a higher EQ I wouldn’t have had to write this post

1 Comment

My Lipedema Life

The vast majority of people are unaware of fat disorders, thinking that anyone who looks obese, or has large limbs is from caloric intake alone.  But fat disorders indeed exist and I have inherited a condition called Familial Lipedema, a genetic fat disorder, from my mom.  My great-grandmom had it, my mom, me, and my nephew have mild to moderate forms of the disease.

My disorder became noticeable around the age of 10.  Our fat disorder starts in puberty, and mine is considered moderate.  Initially I developed soft tumors under my knees and above and below my ankle bones.  These were impervious to weight loss and even though I was not heavy when I was a teen I starved myself into anorexia to try and get rid of the swelling but to no avail.  It only made me look worse.  Over time I developed soft tumors in other parts of my body including my arms.

Generally people with this type of fat disorder have a thin torso/abdomen and large arms and legs with a “shelf” above the ankle. It is quite easy to identify but I am a little aggravated that I had to diagnose my own condition. I was having significant swelling in my legs in addition to the tumors so I researched genetic fat disorders and found it.  I asked my PCP to refer me to the lymphedema center.  He thought I had lymphedema,  having never heard of fat disorders, so he was in agreement with getting an evaluation for the additional edema that had started several years ago.

I have learned a lot since then.  I learned that Familial Lipedema is not that rare.  I learned that the only people who know about it and how to diagnose it are trained physical therapists.  I learned that this is a disorder of both fat metabolism and fluid transport.  I learned that early intervention is crucial for preventing serious complications.

One would think that physicians would be more interested in this condition given the complications of venous insufficiency, chronic edema, infection, lymphedema and lymphoma?  But unfortunately in the US, fat is fat and physicians do not know about distinctions.  Even endocrinologists, who officially “own” this condition in other countries, do not know about this condition.  Most of the studies are from UK and Europe.  And there is only one full time specialist on the fatdisorders.org site who is an expert in Familial Lipedema, and she has a waiting list of 18 months to see her.

There are no words for this blatant discrimination

As the diseased fat builds up, pressure is exerted on underlying lymphatic tissue both from the fat tumors and from the fluid transport abnormalities that trap fluid into the tumor areas.  Over time, lymph nodes and vessels are damaged, leading to secondary lymphedema.  Venous insufficiency and lymphatic buildup lead to venous insufficiency ulcerations.  Nerve compression may occur especially if the person has arm involvement. The lymphoma issue is not well defined.  Actually, nothing is well defined because so few researchers are studying it.  Somewhere in all this muck is that 60% of Familial Lipedema sufferers also have described Joint Hypermobility, indicating a disorder with syndromic features.

The hallmark of management is compression.  Fluid cannot be allowed to flow into the fat tumors.  Compression knee high socks must be measured by a professional and worn night and day.  Lymphatic decompression should be performed daily and a machine called the Flexitouch has been developed for lymphedema sufferers that is also FDA approved for use with Familial Lipedema to the “tune” of 7000.00 USD.  Over time, the machine and socks will reduce the size of the tumors and leg and the more one complies with the treatment plan the more dramatic the loss.

No, it cannot be reduced with diet

Unfortunately the machine is a pain.  A foot to waist sleeve is applied for an hour per extremity.  Finding two hours a day is very difficult and the burden of this quickly becomes an impediment.  Applying the sleeve and properly closing the multiple velcro tabs leaves me frustrated and exhausted.  But my leg is down 9 cm since starting and I cant push fluid with my finger anymore.  I had an “orange peel” look to my shins with blue lower legs and this is gone.

The socks are expensive and hot and (for me) they dont stay up plus they itch, so I have not been as compliant as I need to be.  Winter temperatures will allow me to wear them, as I overheat easily in the summertime.

There is a temporary fix available but the diseased fat will return over time.  The fix is a form of water-based liposuction.  This is reserved for severe cases that involve nerve or blood vessel compression.

Psychosocially, this disease is devastating.  Most of the social decisions I made in my life were based on my perception of acceptance to my condition.  And I couldn’t hide from my condition as I was subjected to dresses and skirts at the private school my parents sent me to.  I was a thin girl with large swollen legs under my knees.  And my hypermobility syndrome made my knees appear recessed into my leg.  Not a win-win for one’s confidence.

Not only did I have snide and cruel remarks at school, my snobby grandmother, who passed the defective condition down to me, would comment “out of earshot” to my grandpop how bad I looked with “granny’s legs” and made it sound like it was my fault that I was afflicted with this.  At least “granny” had long dresses to hide under, clothing in today’s world is not kind to anyone with less than perfect limbs.  But I understand to some extent, I was her only granddaughter, and I was defective.

I lived my teenage years silently heartbroken, grieving for the normal me I would never see.   I believe the stress of this brought on bipolar disorder, which started at age 12 and juvenile fibromyalgia, which started at age 14.  And I never told anyone about either of these until my 20’s.  I didnt want to burden my parents either financially or psychologically.  They had spent so much on my infections and ENT problems and I knew that whatever was causing the pain was not an easy fix.

I was my own broken cross

Imagine having to live with all of this, and living silently.  I was too sad to do much other than exist.  At least the mood and pain disorders kept me pretty distracted from my feelings of social inadequacy.  But I do not look upon my teenage years with anything outside of a feeling of survival.

I havent given a crap about how I look since my mid twenties.  Marriage gave me the security that I am more than the sum of my limbs, and my husband is a true Renaissance man.  But I cannot lie and say that I would not welcome a better profile in a dress.

1 Comment

My Gumby Life

Everyone has at least one family member “famous” for a physical ailment.  Sometimes that is the only thing known about them to younger generations.  At family gatherings I frequently heard about “Grandma with the leg swelling” or “Great Aunt Bertie who weighed 600 pounds” or “everyone has bad arthritis after age 50” etc.  Well, at least my family has these infamous relatives.

My dad’s side was known for “double joints”, severe arthritis and mitral valve failure.  Even as a child I questioned these symptoms as significant but I was not encouraged to look into it further.  Double jointed kids are known for their acrobatic maneuvers and often are the clowns of the class.  I was horrified when they would twist arms into crazy directions, thinking that can’t be good for them. 

And I was right. 

“Double jointedness” is associated with hyper-mobility syndromes.

Joint hyper-mobility syndrome (JHS) is the “newer” name for Ehler-Danlos type II and III. 

As a syndrome, JHS is starting to be recognized as a large cluster of physical symptoms which include easy bruising, joint and skin laxity, chronic pain, chronic headache and migraine, nerve damage, abdominal disorders, weak heart valves, nasal septal disorders, sleep apnea, neurovascular dysregulation, IUGR and other symptoms related to weakened connective tissue depending on the classification.   For me, the main symptoms in childhood was extensive bruising and “clumsiness” which actually was due to joint laxity or “double-joints”.  

Unfortunately, untreated joint laxity leads to mobility disorders as the tendons and ligaments are too loose to hold the joint stable and the afflicted person naturally uses extra muscles to help the joint.  Over time this misuse leads to pain and strains, conditions such as “patello-femoral syndrome”, lax postural muscles and joint pain that can be severe and disabling. As the person gets older, severe arthritis, degenerative joints,  sleep apnea and other problems related to weakening of connective tissue are common complications.  Any connective tissue can be affected.  The connective tissue at the back of the throat and connecting the tongue is especially vulnerable resulting in sleep apnea as the tissue weakens over time.  A condition called “POTS” syndrome ( a neurovascular condition) is also strongly associated with JHS.   My dad’s family also have valvular disorders which are associated with this condition as valves are connective tissue.

Joint hyper-mobility is supposed to have mendelian inheritance, which is true in my dad’s family.  My grandmom had it and gave it to my dad and his brothers.  I have it and both my children have it.

JHS is poorly understood, under researched, under diagnosed and under treated.  Chronic pain physical therapists and neurologists were the providers who diagnosed my condition this year.  Oddly enough the physical therapist at the chronic pain center and my neurologist diagnosed me within a month of each other. 

I have been seeing doctors for a lifetime for issues that are now seen to be associated with this condition.  I had a deviated nasal septum in my 20’s, a lifetime of ear infections from weak eardrum and eustacian tubes, severe snoring from the time I was a young teen.  I have seen rheumatologists for over ten years and none of the three docs ever tested me for this.  I fired my second specialist when he said “I don’t look at joint hyper-mobility”.  It is supposed to be in the realm of rheumatology but that is not the reality.  I was quite disgusted with my daughter’s pediatric rheumatology and neurology evals.  They knew nothing about this condition and it is critical that young people with this learn  how to walk, sit and move properly and learn how to protect their joints.  So I took my daughter to an adult neurologist with an interest in neurologic manifestations of hypermobility and she has severe neck hypermobility with signs of neuro involvement, sleep apnea with airway narrowing and severe POTS. 

So I am giving the big finger to pediatric specialists until they get their act together.

I have been in physical therapy since February of 2017.  It is a long haul, and re-learning how to use the proper muscles to walk, sit, and stand is painful and frustrating as they are underdeveloped and I use them without even thinking.

I have multiple conditions associated with hyper-mobility, including neurovascular instability (POTS), sleep apnea, nerve compression, radiculopathy, degenerative joint disease/arthritis, irritable bowel, GERD, plantar fasceitis.   Surgeries for sleep apnea and deviated nasal septum were not successful because my tissue is too weak.  My son’s IUGR (intrauterine growth retardation) was most likely contributed by weak placental vessels (they got knotted up).  He had the classic EDS newborn look—sunken abdomen and normal head.

But this is not true for everyone.  Some people seem not to be too affected by it, and in fact some of the best ballerinas and gymnists have JHS as the enhanced flexibility is a strength in these fields.  People with JHS also tend to bounce and not break, and have walked away from terrible accidents without serious injury.

I had what should have been a lethal injury when I was 17.  A six foot guy fell about four feet off a ladder straight onto my head and my neck took the force of the fall.  My neck should have broken but my hyper-mobility most likely helped me walk away with all my limbs intact.  I have had chronic neck pain since but I lived.

Ever since my diagnoses I have developed a hyper awareness of this condition in others.  One can tell by the knees.  The feet pitch forward way over the knee and the knee protrudes out from the back with no bend when the person is standing with the leg fully extended.  This week I saw a mom and her two children and a teenager with this look.   I wanted to go up to them and ask them if they are having problems with their joints, but I hesitate to disturb them.  But I know that this will most likely be missed by their care providers.  What to do…..

%d bloggers like this: