Archive for the ‘Ehlers Danlos’ Category

In 2012, I began to come very close to passing out several times a day. I had no idea why. My pulse and blood pressure were all over the place. I also had horrible chest pain, but just ignored the symptoms.

Then this happened during physical therapy for my ongoing sacroiliac joint issues. EMS was called. They hospitalized me for 5 days. A neurologist diagnosed me with “dysautonomia,” and explained that my autonomic nervous system wasn’t functioning properly for some unknown reason. During discharge, he recommended that I “go buy an abdominal binder,” a device would provide constant pressure on my abdomen to help keep my blood circulating and prevent sudden drops in BP, tachycardia, weakness and fainting – all hallmarks of dysautonomia.

Abdominal BINDER? What?

I asked Google, and was horrified at what I was shown: latex tubes with multiple rows of bra-like hooks (like those popularized by Kardashian wanna-be crowd), and contraptions made from beige, scratchy material with a confusing array of laces and buckles – like a straight jacket without the “hug yourself” arms. Noooo thanks. I’ll take my beta blockers and do more Pilates to “zip up” my abs.

Well, that approach lasted about a year. Every time I left my house, it was guaranteed that I would end up sitting on the floor of retail establishments and/or propping myself on random cars in parking lots. The unpredictable BP changes, combined with excruciating back and leg pain (exacerbated by repeated sit-down-on-the-ground-stand-up-again episodes) were draining and embarrassing. I dreaded leaving the house, and refused to go anywhere alone. I stopped teaching jewelry classes, and would only spend an hour or so in my jewelry studio a few times weekly.

Then, serendipity!

Two years ago (3 years after my dysautonomia diagnosis), I was comparing symptoms with an acquaintance – she also had an SI joint anomaly similar to mine (excruciating point-specific pain, joint laxity, hip/leg pain). Her physical therapist had recommended that she try a corset to help stabilize her low back and hips.

Wait…What? A CORSET??

My first thoughts were probably the same as yours:  “Corsets are for…strippers, porn stars, hookers, BDSM fetishists, Playboy bunnies and…and…and people with body dysmorphia that want to squeeze their ribs into unnatural shapes…and…and…NO FRIGGIN’ WAY would I wear one of THOSE!!!! Eewww.”

Then – I had a flashback to what that neurologist had told me in 2012 – “…abdominal binder.” Hmmm…..

So, I did some research. And, I learned that corsets aren’t just for Renaissance faires, fantasy wear and adult sexual play.  Corsets have a long, rich history, full of controversy, with over 3 centuries of documented drama and discourse about the good and bad. Used for centuries to support the fatigued torsos and backs of women (and men!), address a variety of health issues, and of course, fashion challenges. Corsets have actually played quite an important role in both fashion and medical history. (If you’d like more details, Google can help you delve into the blathering of doctors, designers and devotees on both sides of the debate…from the 1700’s until today. Enjoy!)

So, I bought an honest-to-goodness corset, underbust style (just the hips and torso – no boob support involved), with steel bones and lacing. Not a latex tube. Not a “waist-shaper” from Amazon with multiple rows of hooks-and-eyes. And, certainly NOT one promoted or sold by any reality TV star.

After about 2 weeks of “seasoning” (breaking it in…getting it used to my body, and my body to it) –  VOILA!

  • It helped maintain my blood pressure!
  • It stabilized my loosey-goosey and wickedly painful sacroiliac joints. My body wasn’t feeling as weak as it had before after a couple of hours of activity,  as if it was held together by overstretched rubber bands. [I have stretchy connective tissues from Ehlers Danlos Syndrome, which, contrary to other articles addressing EDS and corsetry, is NOT an autoimmune disorder, but a genetic one].
  • I was able to work at my jewelry bench longer than an hour.
  • I could drive my car more than 10 minutes without back, neck and shoulder pain.
  • I was sitting up straighter, walking much more gracefully, and I had a waist again!
  • My boobs and stomach no longer appeared as one amorphous blob, and I didn’t have to wear an XL shirt over my size M body just to hide my shape. With the corset, clothes looked great on me again! I could wear things I had put in the “I’ll never fit into THOSE” pile.
  • Looking better improved my self esteem (in spite of my ongoing, complicated and not-properly-diagnosed/treated health issues). These improvements in my life were worth far more than the $60 I had paid for that first corset.

After purchasing three more off-the-rack corsets, and so much more research, I learned that a “bespoke” corset – one made to fit MY body and address MY specific medical issues, would probably be more beneficial.  With the guidance of an experienced and educated member of the corset community, I found a designer to help me.

Carlos, of Innova Corsetry, designed and constructed an exquisite corset for me, with architectural precision and attention to detail. Most important was the inclusion of “cupped ribs” (no compression at all on the ribs, the waist being the focus of any reshaping desired, or in my case, compression to control my BP). He shaped the hips to fit quite snugly to stabilize my troublesome sacroiliac areas and gluteus muscles that in turn, support the hips. Genius!!

With this beauty hidden stealthily under my clothes, I can move about with good posture, drive without slouching, and spend several hours at my jewelry studio. It actually extend my tolerance to “do stuff” to 4 – 6 hours (sometimes much more!), far longer than the brief periods I could endure before corseting. I now go on errands without fear that I will randomly pass out in public places as before. I can make plans and participate in life again. And, I feel much more confident because I know I look better that I did before I began my corset journey.

Ok. Stop right three. I know what you are thinking.

YES, I CAN breathe freely and completely in my corset. As mentioned above, the cupped ribs are designed to support, not compress.

NO, it doesn’t hurt.  I drive, do errands and housework, work easily in my jewelry studio and do my photography with ease. I forget it’s there.

And, NO, my muscles are not weakening because I wear a corset – the opposite is true!  All the years of physical therapy, gait training, Pilates and core stabilization finally make sense. I am able to maintain the correct position of my pelvis and low back with ease. My corset provides “feedback” throughout the day, reminding me to use all of my core muscles for stabilization. Now, my torso musculature is much stronger and more supportive when I am not wearing the corset. Without it, I am able to continue moving about for another hour or so without the familiar stabs and spasms I had endured for almost 20 years.

A corset should never be painful. If it is, it isn’t on correctly, or it is the wrong type of corset for your body. NOTE: All corsets are NOT the the same. Different styles influence the body in different ways. It is not a “one size fits all” solution. Many less expensive corsets are incorrectly shaped and are painful to wear. Before you consider corseting, do lots of research and talk to people that corset regularly to learn how to find the right corset. There are plenty of resources on the interwebs and in social media that are very helpful! There are many, like me, that started corseting for medical reasons are happy to share their knowledge.

Oh – my doctors – how do THEY feel about my decision to corset? Well, most don’t have the knowledge of what a corset really is – some seem pleased and intrigued I have found a way to address some of my medical issues that has been largely ignored by medical research. Those that are openly critical of the practice seem get their information from the sensationalized (and not very accurate) comments of Dr. Oz and his ilk. Luckily, I have physical therapists that applaud my investigation and use of the corsets, and understand their benefits.

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Would love to credit this drawing – but it was a repost in a FB forum – would live to find out the brilliant would that drew this to give proper credit….if anyone knows, please let me know.

Why and I returning to my blog??? Stay tuned for these posts that will explain…

I had a huge disaster over the last few weeks that has totally given a new definition and meaning to the title of my my blog, “MisdiagnosedMe.”
I have had to file complaints about violations of my patient rights (hello New England Baptist Hospital, UMASS Memorial…)….some pretty crappy things have happened to me and I can no longer just roll over, whine a bit about it on Facebook and try to forget it.. Misinformation purposely placed in a medical record is a serious violation of patient rights and can effect the health of the patient – and this info gets transferred fast throughout the health care systems…mine went to 5 different organizations in 4 days! Think of the damage that caould cause. Think of the damage it DID cause…we can no longer keep quiet about these things. Time to stop whining in forums and take real action.
Doctors are writing parody songs about people that are on pain meds for chronic illnesses – they have officially reached the bottom of the barrel of disparaging patients. This has to be shared. How is this OK?
I had a considerable amount of time after a recent serious surgery that let me examine the forum-universe of many chronic illnesses. They are all alike. All claim symptoms belong to them and their zebra illness – how is this possible when all these symptoms are part of X, or is it Z, or is it Q? I have done a brief sociological analysis of this and may have a answer or two.
I want to explore the connections between symptoms of EDS – symptoms that overlap with dysautonomia, autoimmune disorders, skin disorders, etc. etc. I would like to discern if ther is a connection – perhaps we all have just ONE zebra illness, not 4. I am hoping that my analysis (don’t with the help of anonymous survey programs) may Help illuminate this? Maybe even get someone’s attention?
And, most of all I want to hone my writing skills and make use of my experience and education, so perhaps someone out there with some “brand recognition” will notice me and recognize what I have to offer the chronic illness community. Its seems as if the harder and faster I dance, the less I am am noticed and/or heard.
Dammit. This time, I am going to be heard. Even if I have to write my own parody song about doctors that enjoy disparaging their patients, nurses that mock and then abandon their patients as they are stuck on a commode hours after a a major surgery, and hospitalists a that make up new diagnoses to include on your chart, disrespect all prior doctors’ and diagnoses and then make jokes about it right outside the door of the patients room. I promise it will be catchy.

Comments?

InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”