I was 29 years old when I became pregnant - the specifics of the situation are a story for another time, but at that time, I was, by all accounts, a fairly healthy and very active person. I was a police officer, I raced BMX on the weekends, I rode a motorcycle regularly and went horseback riding every Sunday morning. I had a lot of "little accidents" and bruised easily plus I suffered with an unusually weak immune system, and I had lots of small things that seemed odd for someone my age - but I never would have dreamed that I would one day be completely disabled because of something I'd had all along.
It wouldn't be fair to say that being pregnant CAUSED me to become disabled, but had I not become pregnant, it's impossible to know if i would have ever been seriously affected by the Ehlers-Danlos Syndrome, especially to the extent that I am now. I may have gone through life just being sick more than the average person, being unable to tolerate the heat, and having an unusual number of "little issues" here and there with my health.
I didn't want to have a baby- I had never wanted kids, but all of that is an entirely separate story. Regardless, by the time I was nine months pregnant, my best friend was doing the best he good to take care of me as the swelling (of my legs and feet) had gotten so bad I could barely walk and all I wanted was the baby O-U-T. When we had gone to the hospital to have the baby, my birth plan was a scheduled c-section but my baby plan was open ended... I was fairly sure my son would be headed to an adoption agency as my life-plan had never included children and I had no intention of being a single parent.
During my pregnancy, I had moved to my home state of NJ to be with family - and with my best friend who I came home every other month or so to see during the ten years I'd lived in Florida. How we didn't know that we'd one day end up married neither of us can figure out in retrospect... and even though we never technically dated (about a week before our son's birth we discussed that by entering a relationship we were basically acknowledging that we were planning to get married - hell, hadn't what we'd been doing all that time we'd spent together over 14 years essentially been dating without the kissing and whatnot? Anyway, he is Kaedin's father, and he had been his daddy since our son was the size of a lima-bean growing in my belly even if we didn't actually know we'd choose in the end to become his parents.
Justin also had never wanted kids, I was dead-set against them, and despite our being the best friends for fourteen years, it wasn't until I moved home pregnant and in crisis that we fell in love... right there between the morning sickness and my ever-expanding mid-section, somehow it happened. The first time he told me that he thought I was beautiful was a slightly sideways comment about how pregnant women can be really beautiful. I got what he was throwing out there... neither of us had ever been the mushy type - after all, we had been platonic besties for over a decade, but somehow it worked.
And as it turned out, he is the most amazing father in the world - like I said, he was, even before we knew we'd be parenting the little munchkin. He was incredibly supportive, from foot rubs and staying up all night with me when I was feeling really awful to emotionally supporting me through the entire crisis that had caused the pregnancy in the first place. But my amazing husband (he's my husband now, he wasn't yet then) isn't what this blog is about... this is all about how my pregnancy caused me to become disabled.
Despite his best effort to keep me smiling and get me comfortable, even all of the foot-rubs, and back-rubs (Not to mention and how amazing to go from scared, alone and pregnant to having the most wonderful man in the world supporting you through a rough pregnancy ALL all the emotional trauma to boot), I was still getting more and more uncomfortable.
He would hold his hand on my ever-expanding belly to feel those insane kicks (and the hiccups my son had for almost an entire month before he was born!) and it was truly amazing to know how loved we both were - but still, I was in a LOT of pain by the time the 9-month mark rolled around. I hadn't gained much weight throughout the entire pregnancy (in retrospect, thank god for that!) - but all the sudden at eight months, it looked like I'd swallowed a basketball.
Due to the traumatic nature of my pregnancy, sadly, there are few pictures the documented the journey, so you'll have to take my word for it, but at seven months along, I was still getting the side-eye whenever I'd park in the "expectant mothers" spot, and yet less than a month later, right around Christmas, everyone (including myself) was quite positive I would burst at any moment, possibly with twins! So when the day finally came (and yes, we made the decision to keep our son and bring him home while daddy was holding him in the middle of my tubal-ligation... the big emotional mess of a decision I'd made as a kick-back from the trauma of the pregnancy in the first place...) - I thought that all that back pain, leg pain, etc would finally end.
I went home on pain-killers - for about ten days after my c-section and during that time felt pretty great. Of course, much it it was probably the fact that I was now engaged and in love with both of my amazing men... I remarkably feeling well for someone who had just had a human being ripped from their abdomen and I was actually up walking around quite a bit just hours after our son was born.
I had remembered the horror stories from my sister in law who couldn't walk for days afterwards, but none of that was the case. In all reality - had my digestive system responded better to the dilaudid, I probably could have gone home that next day, but instead we got snowed in and spent six blissful days with nurses and catered meals and we all snuggled together and slept in my hospital bed. (It's a pretty weird way to start a marriage, by the way... his family was all "So... you're not coming home after work because you're at the hospital with your new baby.... um....)... but again, THAT is a whole other story. :-)
Our First Family Photo (1/24/11): I was crying. Right before this photo was taken, my then fiance brought the baby over for my first look and said to me, "I think we need a car seat." Until that point, we hadn't decided that we would be parenting vs. my placing the baby for adoption as I'd been planning through my pregnancy, so this picture is incredibly special to us. I was so incredibly blown away that my best friend had fallen in love with our son so completely before I'd even had a chance to lay eyes on him.
The problem wasn't my body wasn't the c-section or the recovery afterwards, what actually "upset" my faulty collagen had started long before the surgery as my body was moving through the stages of pregnancy and preparing for labor. All the low-back pain and hip problems I'd been writing off as pregnancy-related weren't actually -they were foreshadowing.
The problem began to show itself in the weeks after the birth when the low-back pain from the pregnancy (it had crept up right around the eighth month) had never gone away... by early summer it had gotten so bad I was at my GP asking for pain medication and MRI and x-rays. Disappointing and confused by "minor arthritic change" being the only notable thing, I couldn't understand why my pain was only getting worse. And spreading. It seemed like my knees, my ankles, my shoulders... one at a time, every joint in my body was starting to slip out of place, to sit funny - I'd dislocate a hip during sex (sorry for the TMI, but I promise, no one was more traumatized than we were!) - I'd step down a step only to find that my ankle had slipped out of place and end up in a heap on the ground.... something was very wrong and it wasn't related to my now months-gone pregnancy. By now my son was standing on his own, and I was becoming less and less able to stand on my own, even sitting up for long periods was excruciating. While he was having tummy time, all I could do was lay flat on my back on a heating pad, taking twice the recommended dosage of Advil and nothing was helping.
Finally, almost a year after my son's birth- after various referrals and two orthopedists who told me that nothing was horribly wrong with my back, I saw an orthopedist who was able to give me some REAL answers. (For the record, my husband had already come to the right conclusion) But for me, this was a real specialist, who I really trusted, who could explain what no one else had figured out: I have Ehlers-Danlos Sydrome, Type III. Otherwise known as Hyper Mobility Syndrome, it's a genetic condition that causes faulty collagen, which is otherwise known as the glue that holds us all together. So here I was, feeling as if I was coming apart at the seams... and I really WAS! As upsetting as it is to have a genetic disorder and no hope for a cure - everyone I know who has been diagnosed to this day is just glad that they finally have answers.
Being told that it's not real, that it's all in your head - it's demeaning, it's downright abusive. To have doctor after doctor treat you as if you are a head-case while your body is being racked with such severe pain that your quality of life is becoming non existent, you just don't understand what that's like until you're living it. I was just glad to have something I could go home and Google, to read about, to learn about, to learn to cope. The first stage of accepting this condition is knowing you have it - so at least I had that.
And for the record, I really have to thank my orthopedist Dr. Levy from Sprains Strains and Fractures in Cherry Hill, NJ because he's an amazing person and he really may well have saved my life, because up until the point where I started getting proper treatment for this incredibly painful condition, it was not looking good for me.
I spent the first few days after the diagnosis in tears- at first I was terrified I had Type 4 (Vascular EDS, which is often deadly) - I do not, I have type III. But still -this has no cure. It's a lifetime of pain. The dislocations will never go away, they will never stop - surgery won't help. This is a condition you manage and learn to live with - but it's not something that you can change because it's faulty genetics. And worse... I could have passed it to my son. But now you know the end of the story, and you didn't really find out HOW I went from being a healthy happy 130 lb police officer to a 185 lb disabled woman with a three year old son... so let me explain how pregnancy (and later, an inept moron of a doctor at Virtua Hospital in Voorhees) destroyed my body...
(but first let me say... even had I known that this would be the outcome... we wouldn't trade our son for the world.)
HOW PREGNANCY CAUSES EDS SYMPTOMS TO GO AWRY ...
The relaxin hormone floods a woman's body at the end of pregnancy to prepare her hips and pelvis for birth - unfortunately that hormone loosens up ALL your joints, not just your hips and pelvis. A healthy women's body will slowly tighten back up, and her lax joints from pregnancy hormones will slowly go back into their normal place after labor as the healthy collagen does it's job after the pregnancy is over.
Unfortunately, my defective collagen couldn't help my body go back to where everything belonged. The pregnancy set me up for a lifetime of joint dislocations each and every time I move, even ever-so-slightly, the wrong way. If I reach for something in front of my, my shoulder can drop out of the socket. When I roll over in my sleep, my hip often slides in and out of socket more times than you flip your pillow to get to the cool side.
Every joint in my body regularly dislocates, except oddly, my elbows, which seem to have remained free from the effects of my hyper-mobility. Everything else in my body is affected; my jaw broke during surgery to pull my wisdom teeth, my fingers dislocate from typing, writing with a pencil is physically painful, my wrists snap from picking up my cell phone to look at my text messages, toes slide out of socket and are so cramped and painful the only way to put them back in place is to get on my feet and apply pressure to them with my whole body to "re-set" them into place, my ankles drop if I try to run (that's a joke - trust me, there's no running going on here!), my knees dislocate from staying bent on an airplane or at a movie, and more than anything, my hips.
My hips are why I walk funny - they are why I'm in horrible pain as i type this blog, they are why I can't sleep, why my back is constantly a huge tangle of painful knots.
My hips are the bane of my existence... That's what the collagen disorder, EDS Type-III is, after-all. As a child, they put these awful bar-shoes on my feet to try to stop me from "toe-ing in" as they called it. Doctors told my parents not to worry and that I'd "outgrow it" and not one specialist was concerned that I can rotate my feet well over 180 degrees inward, even walking with my feet facing forward and backward at once. Here's a photo to illustrate. And here's one that shows what I can do standing up...
It's quite typical for woman (and their doctors) to only put together all the puzzle-pieces of a lifetime of "little things" together after a pregnancy, when all the damage done by the relaxin begins to cause chronic pain. And that's what happened to me.
HOW LEVOQUIN AND CIPROFLOXIN CAUSED ME PERMANENT INJURY AND A LIFETIME OF PAIN...
One of the biggest things that contributed to my life-long battle with chronic-illness (in addition to the pregnancy that triggered the onset of severe symptoms) - was 100% the fault of Virtua Hospital and the HORRENDOUS admitting doctor who was put in charge of my care there. (*Please see the foot-note to this story) That's a story for another time, but I promise I'll tell it.
There is some debate about the facts - but this we know for sure: Shortly after my son's birth my husband and I both were diagnosed with Mono (well, to be fair, he had Mono, I was battling with the Epstein-Barr virus as I have immune system issues we didn't yet know about). My husband became jaundiced and was hospitalized, I had an IV infiltrate and and had a serious issue with cellulitis I began to battle with nearly permanent urinary tract infections and kidney infection symptoms.
I had sharp pelvic and abdominal pain, pain in my low back near my kidneys, burning and the constant feeling of needing to pee.... it was never-ending and so severe that I went to the ER nearly a dozen times because absolutely nothing would reduce the pain short of IV morphine or dilaudid. It became unbelievably bad during my periods, after sex, after bathing, swimming... I did everything possible to avoid UTI's - literally followed the handbook to a T - including giving up sex for quite a while despite the fact that I was newly married and very much in love. Nothing I did helped.
I was admitted to Virtua Hospital more than nine times in the year after my son was born, and several more times in early 2012. During the first few hospitalizations, I was told that I had MRSA in my kidneys... MRSA is a HIGHLY infectious staph infection. It HAD to have been given to me during a cathaterization... and up until that point I'd had exactly ONE catheter in my entire life: DURING MY C-SECTION... at Virtua Hospital. Isn't that nice? I was treated like a bio-hazard. Everyone who came into my room suited up as if I was an E-Bola patient and even friends and family were supposed to wear gowns, masks and gloves to come see me. My newborn child who I'd care for at home, skin to skin, I was told was not allowed to visit me in the hospital (they got WW-III about that, and I won, btw.) I missed my own baby shower (it was after my son's birth) because I was in the hospital, and I was in quarantine, so they wouldn't even let me guests visit me.
So the onslaught of antibiotics started. They pumped me full of antibiotics and I never began to feel better - only worse. The only thing that ever seemed to help the UTI symptoms was over the counter AZO (which I still use to this day on a regular basis) - even the various antibiotics didn't keep the infections at bay for more than a week or two. Some of my hospitalizations were LITERALLY just days after I'd been released. I was repeatedly treated with two strong antibiotics: Levoquin, and Ciprofloxin.
Each time I would get a bag of IV antibiotics, the pain would come. I felt as if they were pumping wet cement into my body and it felt as if every joint was hardening to a solid. I felt like I couldn't move - the fire-y pain that shot through my veins was worse than the broken jaw, worse than third degree burns, WAY worse than the c-section, even worse than the bowel impaction and intestinal tears I'd survived... it was HELL. I reported to the nurses my horrible pain. Occasionally a doctor would up my dilaudid from every 6 hours to 4, or add Vicodin on top of my morphine, but nothing was ACTUALLY helping. I was just getting sicker and no one knew why.
I'll tell you another time about the world war that went on between the doctors and I, but suffice to say that if a hospital can't explain your symptoms, they have two responses...
1) They'll tell you that they don't believe you're actually sick because your symptoms "don't make sense" or because nothing you're complaining of is showing up on their tests.... and they'll discharge you, even if you have VISIBLE symptoms, such as bacteria or an infection they can confirm.... they'll discharge you, after having you on anti-inflammatory medications, pain medications, antibiotics, probiotics and ran a whole bunch of tests.... and they'll send you home with NOTHING. The hospital will flat out tell you that they don't know the answer and that they "can't keep you here forever" and will simply send you home with NO answers.
2) They'll imply that perhaps you have a mental illness, that the pain is in your mind, or worse, that you are simply there seeking pain medications because you are a drug addict. I repeatedly told the doctor after being trearted with antibiotics that I was experiencing SEVERE and worsening pain... and in response, the admitting doctor flat out accused me of "drug-seeking behavior" claiming that my report of pain made NO sense and COULDN'T be true. (*Please see the foot note below about the serious affects of the Fluoroquinolone family of antibiotics.)
*I was accused of this once - by the same idiot doctor I mentioned above and in the blog post (here).
Why? Because at the time, in her words "No one being treated for a kidney infection SUDDENLY has sharp severe pain in her hip, shoulder and lower back. It makes no sense." Seven months later, a black-box warning was added to the Fluoroquinolone family of antibiotics- including LEVOQUIN and CIPROFLOXIN. Read more about this in the footnote or (here).
Basically what it comes down to is this- SEVERE PAIN as a side-effect of those antibiotics is a sign that something is VERY very wrong. And she continued to treat me with those same drugs, over and over and over, all the while, claiming that I was "over reporting" my pain and wasn't being truthful. In the end, her ignorance and ignoring my reports of pain, ended in PERMANENT damage to my joints, throughout my entire body, that I now have to live with forever. .
** Footnote Regarding Fluoroquinolone Antibiotic **
Approximately 7-9 months after I was accused of lying when I reported severe pain during and after IV antibiotic treatments - the FDA released new Black Box warnings about the SERIOUS dangers associated with these antibiotics. Here's the information from the FDA.
Warning: Fluoroquinolone Antibiotics May Cause Permanent Nerve Damage.
“The U.S. Food and Drug Administration (FDA) has required the drug labels and Medication Guides for all fluoroquinolone antibacterial drugs be updated to better describe the serious side effect of peripheral neuropathy. This serious nerve damage potentially caused by fluoroquinolones may occur soon after these drugs are taken and may be permanent...
Peripheral neuropathy is nerve damage in the arms and/or legs, characterized by “pain, burning, tingling, numbness, weakness, or a change in sensation to light touch, pain or temperature, or sense of body position.”
Due to their tremendous health risks, fluoroquinolones should be reserved for treating serious bacterial infections that won’t respond to any other treatment, when the patient is made fully aware of the potential for serious adverse events. Instead, they’re often inappropriately prescribed for mild conditions like sinus, urinary tract and ear infections.
In fact, fluoroquinolones are among the most commonly prescribed antibiotics in the United States. I highly recommend you take pause before filling a prescription for these drugs, especially if you have a “routine infection” that has not been treated by other agents that have a safer side effect profile.
You should not expose yourself to this degree of risk unnecessarily! The dangerousness of fluoroquinolones definitely warrants some serious discourse with your health care provider about whether they are really necessary, versus safer treatment options.
And that's how it went throughout my twenties... I'd gain a little weight here and there (on my first trip home, five months after I turned 21, my mom was shocked to see me at close to 135 lbs.... but empty calories at the bar will do that. I'd officially gained my freshman fifteen! But that same year, when I returned home for Christmas, I was back in my size three jeans and back around 115 lbs. When I entered the police academy in August 2004 I weighed all of 114 lbs at weigh-in, and an eight months later at graduation, I was in the best shape I'd ever be in (This after two dozen asthma-attacks, an encounter with capsaicin (which I'm allergic to, and ended up using an epi-pen for the first time), a broken toe that I continued to do push-ups and run on, with a VERY aggravated bone spur in my right shoulder, and that i had done P/T for months through HUNDREDS of hip, shoulder, knee and ankle subluxations and dislocations) - I was 124 lbs, mostly muscle, yet even so- I had FAR less muscle tone than a single other person in my academy class, even those who had started out over weight. I was just incredibly proud to have graduated.
It never made much sense that I was so much weaker - so much more easily injured than everyone around me, but I just presumed that it was just who I was. I still didn't know that my entire body was made of defective collagen and that graduating from the police academy, and keeping up with those around me was probably 200 times HARDER for me than it was for anyone around me. After all, other people's bodies don't have to exert a ton of energy just keeping their joints from sliding out of socket while they are sitting still. Ah... EDS. Ah... to be so young and naive.
When I got pregnant with my son, I was 29 years old - he was born January 24th, 2011 at 8lbs 10oz via a c-section and it was one of the greatest moments of my life - even though everything about my pregnancy ultimately set the ball rolling for all of my medical conditions to come crashing down on me at once. (Although my pregnancy did have a big part in helping put my Crohn's Disease into remission, so I can't forget to be thankful for that.)
My EDS became a full-blown thing, debilitating me and causing my activity levels to slow down to from being a full-time police officer to unable to work at all in a matter of the nine months I was pregnant with my son. Despite the increasing pain, and what would eventually lead to the diagnosis of all my main medical issues - just five days after my son's birth, I went back into my size five jeans, and I remained around 135 lbs until early 2012....
Not long after I started on pain-management, on muscle relaxors to help control the ever-present and extremely painful muscle spasms, and right around the time when my thyroid quit working, I began to gain weight, and began to gain it rapidly. At first, I was shocked to be 150 lbs, but thought it was post-baby weight and it would slowly come off. Despite my appetite slowing down more and more to the point where I'd often go days without eating... in a period of approximately seven months, I skyrocketed to 195 lbs.
I have been fluctuating between 180-196 lbs since 2012 and I can't stand myself for it. I avoid photographs, I no longer get (or show anyone) my tattoos, I'm mortified by my once tight, slim and frankly, beautiful body and I don't feel like myself. I used to be the center of photos, and now I avoid going out because I can't stand the chance of being in a photograph. I hate that I take eight thousand photos of my now three year old son, but that almost none of them include much more than my face.
I have tried everything within my power - I often don't eat for days on end, or eat nothing but fruit. I've tried to go back on my ADHD medication which has always in the past lead to weight loss, but nothing I've done has helped. I got to about 185 lbs and stagnated, a few years into living with EDS, and I'm hell bent on doing something about it. But before I could - I felt that I needed to write the back story because a weight-loss journey is so personal, and so individual. I have no idea what it is like to be a person with genetics who makes them pre-disposed to carrying weight. I come from a thin family, and inside, I know that there's a thin person - ME - who is DYING to get out of this body that I'm trapped in, and get back to living my life.
This is my "before". This is the last time I will ever look like this, no matter what it takes to change things. I don't want to be 114 lbs again, but I WILL get back under 140, and it will happen within 2015. I can't change living with chronic illness, but I'll be damned if I'm going to spend the rest of my life more depressed about my weight than the chronic pain and diseases that caused it.
This has GOT to go:
I need to get back to THIS version of me:
Life at 34, as a mother, a wife, a daughter, a friend... with Ehlers-Danlos Syndrome, nothing is easy..but it *IS* worth it.