First Time Submitting to a Literature Magazine

*flails*  I finally did it!  This is the first short story of original fiction that I’ve written, polished, and submitted to a literature magazine.  I’ve mentioned it a few times on this blog as the suicide story.  I’ve also referred to it as Short Story D.  I’ve spent several years writing, but it was exclusively fanfiction, which can’t be published.  I sent my story to Glimmer Train and will send it to a few others in the next week.  The rate of acceptance for this magazine is 1/1000, so the odds are against me.  I guess that’s a bit of an understatement 😄  I’m expecting it to get rejected, but that’s okay.  The endpoint for me is becoming a good writer, and I improved so much in the process of writing and editing this story.  Although, getting something published would be a nice bonus 🙂

I’d love to post the story or snippets on my blog, but I can’t because the majority of literary magazines want first publishing rights.  By posting it to the internet you’ve published it, so most literary magazines won’t accept it.  Although I’ve seen some in the past year that have deleted that clause from their submission guidelines.  The exception is critique sites that are password locked.  Glimmer Train takes blog published fiction, but many others do not, unfortunately.

I spent about a week writing the rough draft of this story and months revising it.  I don’t delete anything, so with each revision I just opened a new document.  There are 18 drafts 😄  I’ve never revised something so much.  Complicating factors were the non-linear storyline and my rough transition from fanfiction to original fiction.

Now I start work on another short story.  I’m not sure if I want to do the one about the little girl with an abusive father or the mother that loses her son and develops a relationship with the little girl that gets his transplanted heart.  I’ll probably do the transplanted heart one because I’ve already started that one.

I took a break from blogging because I just had so many things going on in my life.  I’ve taken numerous 7 day+ writing/reading hiatuses as well.  I might talk about it at a later point in time.  I wish my life was more stable, but it’s not and probably never will be.  I’m flying to the other side of the country tomorrow to meet up with Dr. Millis, one of the best hip preservation surgeons in the world.  It’s looking like my last hip surgery in May 2014 has failed.  The surgery wasn’t with Dr. Millis, but I saw him in 2013 and really liked him, so I’m hoping he can help me.  I’ve had 3 hip preservation surgeries at this point, so I’m hoping I can hold off on another one for 1-2 years.  My right hip is still partially dislocating, which is as painful as it sounds.  Did I mention how much I hate my hips 😄  Wait, I mean hip in the singular sense.  The left one had a scope and is behaving quite nicely.  My right hip is a factory reject 😦

One Step Forward, One-hundred Steps Back

This blog is in reference to my health.  Things were actually going okay (for me at least) till January.  I’ve been living with chronic pain in multiple joints, so okay for me means I can go to bed without crying because the pain is so bad.  I believe I tore my hip capsule on the post-op hip.  I felt a sharp pain when it happened.  Afterwards, I was in a lot of pain and thought I had torn my labrum (would be the third time for that side).  Over the next few days and weeks my right hip started sublaxing (partially dislocating).  It hasn’t done that since before the surgery.  It hurts like hell.  What else would it feel like 😄  I don’t think I retore my hip labrum because I’ve had that happen three times, and this is different.  But the days after a sublaxation are horribly painful.

Everything comes to a halt when I’m in severe pain.  I still had to work full time, and I cried a lot before work because it was so painful.  Of course at work I pretend everything is fine.  I’m good at hiding my pain behind a smile.  It’s also very hard to sleep when I’m in a lot of pain, so I had to work several days on 4-5 hours of sleep.  I withdrew from everything, even my friends.  It’s not just the pain, but also fear.  I’ve had three surgeries on my hips, and the last one was with one of the best hip surgeons in the world.  If he can’t fix me who can?  Ehlers-Danlos Syndrome is playing a huge role in the sublaxations, but my left hip doesn’t sublax, so I’m concerned I still have an unstable right hip joint.  But I really don’t want another hip surgery because each one carries a risk that I could get worse.  I heal about four times slower than normal people, so I won’t know till at least 2 years post-op whether this surgery was successful.

Part of me feels guilty like I wasn’t trying hard to enough with my friends or that I haven’t been dedicated enough to writing.  But a larger part of me realizes there is little I can do about it.  I’m very self-critical, and part of letting go of some of that self-hate is letting go of the guilt.  It does frustrate me that I have written so little since starting my job as a pharmacist in September, but I only have so many spoons and work takes up most of them.

I’m not a normal person.  I can hardly walk right now.  We hired house-keepers because I couldn’t do it along with working full-time.  My last sublaxation happened after I spent several hours cleaning the house.  I have been doing strengthening exercises as well, and I have gone 13 days without a sublaxation.  That’s the longest since the beginning of January.  My right hip joint didn’t start sublaxing until I had been bedbound for several years, so I think my weakness is playing a big part in this.

My husband and I are also planning on starting a family soon, which probably sounds crazy.  It is I guess, but my health is only going to get worse as I age.  That is a long story in and of itself because I will be a high risk pregnancy due to Ehlers-Danlos Syndrome.  I’ve already consulted a high-risk gynecologist about several issues, and will be seeing him again after I get pregnant.

I don’t know what the future will bring.  I try not to think about it because it scares the hell out of me.  When I have kids I will only be working part-time.  I try to focus on the things that I can do instead of the things that I can’t, but that list of things I can’t do keeps getting longer.  *sigh*

Now I’m off to read, The Road for like the fifth time 😄  It’s become a comfort book of sorts for me.  When I’m not doing well I like things that are familiar to me.  It reminds me of everything that I love about writing ❤  I’m reading that and short stories published in Glimmer Train, a literary journal of short stories.

I’ve Been Screwed (My Hip That Is)

I finally feel like talking about my most recent hip surgery, which was on the other side of the country.  I now have screws in my right hip, so the title of this post is apt.  I was talking to one of my hip friends last night, and she asked for my blog.  It made me realize I haven’t talked about my hips for a long time.  This is going to get pretty technical, so this is directed towards the hip chicks that read my blog.  Right after my open surgical dislocation surgery I was pretty upset, which I will explain.  But this is why I couldn’t talk about it for weeks post-op.  I didn’t want my emotions to influence my thoughts, and thinking about hips was really depressing post-op.  I think I cried every day for at least a week after surgery.

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A photo of me right before discharge.  You can see how happy I am here 😄

This is my third hip preservation surgery in 5 years.  This all started when I was 24, and I tore my right hip labrum doing ballet.  I’ve had a scope on each side, but the right one failed and my labrum retore.  I consulted 10 of the country’s best hip preservation surgeons in 2013 because my right hip is an orthopedic nightmare, so all the experts were disagreeing on what should be done.  I was told various things: nothing was wrong, I was a good scope candidate, I needed my pelvis broken and hip socket derotated (aka PAO), I needed my femur broken and derotated (aka FO), and/or I needed a trochanteric plasty.  The consensus seemed to be I have excessive femoral and acetabular anteversion, but it’s mildly excessive.  And it was the combination of those two causing the anterior instability of my hip.  An excessively anteverted hip socket and femur, or a retroverted socket and femur are worse than an anteversion/retroversion combo of socket and femur.  The measurement of the version of the hip socket and femur is called the McKibbin index.  I have a great paper on it by Tonnis if anyone would like to read.  Dr. S even went to a conference to talk about my case, and they all agreed a derotational femoral osteotomy was the right procedure.

I was scheduled for an open surgical dislocation + femoral osteotomy (aka FO) + trochanteric plasty + labral repair + capsule plication.  At no point prior to surgery did he ever tell me he might not do the FO.  So when he told me after surgery that he didn’t do the FO, I was confused and scared my hip surgery would fail for the second time.  There’s another part to this.  I have Ehlers-Danlos Syndrome, a genetic disorder that causes defective collagen, so my soft tissue heals about 4-5 times slower than a normal person my age.  My recovery from any surgery is much longer and more complicated than someone who doesn’t have EDS.  I had a failed hip scope from March 2010.  And my hip labrum retore so easily, I was terrified it would happen again.  So that’s why I was bawling post-op when he gave me the news.

I’m feeling better about it now, but I’m even less trusting of doctors now.  I will talk about that another time, but I have a very long history of doctors trying to convince me I’m fine, and they have all been wrong.  Doctors have a bias against young, healthy APPEARING adults.  Not all doctors, but I’ve seen a lot, and I can’t tell you how many times they have tried to convince me I’m making up my joint problems.  But I digress. . . If my labrum tears again, Dr. S wouldn’t be my first choice because I have no idea what surgery he’s going to do.  He’s incredibly smart and talented, but I’m scared he wouldn’t do the planned surgery, and I’d wake up again with something else done or not done.  I have seen lots of doctors do something different than the planned surgery, but they almost always tell the patient prior to the surgery that the planned surgery may not go as planned, and then they explain why.

Dr. M said the next step would be a femoral osteotomy (aka FO), and if that failed a periacetabular osteotomy (aka PAO).  What bothered me is that Dr. S would not measure the femoral or acetabular version on my CT.  He told me a radiologist should do it.  Dr. M got a femoral version of +28 on the right and +20 on the left.  The radiologist at Boston Children’s got femoral measurements of +15 on the right +11 on the left.  And I have no idea why they got such different numbers.  I didn’t see the radiologist measure it, but I saw Dr. M do it.  My gut says Dr. M is more accurate because he is untwisting or twisting femurs and hip sockets for a living.  I don’t live anywhere near Boston, so I can’t ask Dr. M about it.  And they did an MRI at HSS with a rotational component and my femoral version was +15 supposedly on the right.  MRIs are notorious for under-measuring femoral version.  Dr. Mayo got mid-20s for both femurs, but he estimated it because he couldn’t open up the measuring software that came with the CT.  So, I’m guessing my femoral version on the right is closer to 25-30 than it is 15 because Dr. Mayo and Dr. M got a similar measurement, and I trust them over a radiologist.  That was part of the reason he didn’t derotate my femur.

The other reason he ended up not derotating my femur is that my greater trochanter was huge, much bigger than he anticipated.  Post-op he told me that I had the biggest greater trochanter of any non-Perthes patient he’d ever seen in his 10 years of experience.  He said my hip popped out of the socket at 35 degrees of external rotation because the greater trochanter leveraged my femur out of the socket.  I retore my labrum doing a passive external rotation stretch called the butterfly stretch.  I put no force on my legs at all.  It retore that easy 2.5 years post hip scope.  I think this is the other reason he decided not to derotate my femur.  The damage appeared to be from the greater trochanter, not the anteverted femur and socket.  He continued to say that if I had a total hip replacement without the trochanteric plasty, my hip would dislocate anteriorly within a month.  Prior to surgery I told him my right hip was popping out of the socket about once a week, usually when I got up from a chair.  I had to stick my butt out and waddle to get my right femur back in the socket.  Sounds fun right?  He told me it was my IT band, but after surgery, he said I was likely having lots of hip sublaxations.  And he told me that I couldn’t externally rotate my right leg past 35 degrees without it sublaxing.  So when I told him how flexible I was in ballet he was like O.O  I had pretty good turn out and all the splits, so I guess the sublaxations only became painful when the hip labrum was torn.

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This is how I retore my right hip labrum

I would like to add that I think Dr. S is brilliant, and he’s very skilled, but I’m just sharing my experience here.  I don’t know what my hip looked like once he got me open, and I certainly don’t want an FO if I don’t need it.  I’m hoping this surgery will be successful.  I’ll know in about 5+ years.  But given everything I’ve been told from other doctors, I think it was reasonable to be scared, confused, and upset in my situation.  I would have liked to have known prior to surgery there was a chance the FO might not be done.  There are a lot of pros to not having the FO done.  It’s a much shorter healing time.  My tibias are more twisted than the femurs, so I was really worried if he derotated my femur it would exacerbate the twisted tibias, and then I would need a tibia osteotomy.  Since I only had borderline version problems, if I had a complication from the FO, I might regret having it done.  If my surgery fails for the 2nd time on this side, it will be obvious the rotational issues are a problem because Dr. S fixed everything else.

I’m trying to think positive because thinking negative is too depressing.  I can’t live my life everyday thinking that if I’m not careful enough my hip labrum will retear.  I’m not doing any exercise besides walking and swimming for the rest of my life.  Dr. M told me that due to the EDS, it doesn’t matter how well he fixes my hip, if I’m not careful I’m going to reinjure it.  So yeah, no more ballet for me.  I was training to be a professional ballet dancer as a kid, and I did it off and on as an adult, and that’s how I got my first hip labral tear that ended up setting off a cascade of joint problems.  As soon as one joint gets better it seems another one gets injured.  That’s the beauty of Ehlers-Danlos Syndrome.  I finally got over it and realized I’m going to have to live with chronic pain every day for the rest of my life.  It is what it is.  That’s not pessimism, it’s reality.  I had to let the person I used to be die, so that I could be reborn as a new person.  I’ve had friends try to tell me not to think that way, but I needed to accept reality and stop waiting for something that was never going to happen.  I spent 4 out of the past 5 years waiting, crying, begging, hoping, pleading with God to take away my chronic pain, and it didn’t happen.  So believe me when I say I spent years hoping the pain would stop one day.  And I let life pass me by in the process.  I’m focused on making the most out of my life given my current health situation.

I also get off crutches in a week 😀  I have a shoulder injury, so crutches have been the bane of my existence these past few weeks.  And my left hip is flaring along with my whole spine (I have degenerative disc disease due to EDS).  So I’m super excited I’ll be off them soon ^^  Bouncing on my fitness ball for 10-20 minutes a day has been one of the only things keeping my spine pain under control.  It was really bad 3 weeks ago, and my doctor started me on a medication for nerve pain, and it helped a lot.  I can’t take NSAIDs either because it will inhibit bone healing.  So I was also give Voltaren gel to put on my spine.  Systemic absorption is only 10% so S said it was okay.  At one point I was in bed for 23 hours and I couldn’t sleep or eat due to the pain.  All I did was bawl my eyes out.  I was also scared because I’m not even 30 and my spine pain is so bad.  Spinal fusions increase the degeneration of adjacent discs, especially in EDS, so if I have one spine fusion I’ll need like 5.  It’s usually not this bad because I have managed it with PT.  I’m not ready for more surgery, so I’m hoping to postpone it for as long as possible.

I will leave you with a picture of my right hip.  The screws will likely come out six months after my surgery.

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I Thought Ballet Was My Life

I thought ballet was my life, but then I lost everything, and I realized ballet didn’t mean that much to me.

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A Photo of Me in My Last Ballet Performance

I’ll start off with the back-story.  I started dancing when I was little, and I can’t remember a time when I wasn’t.  It became a serious passion around eleven years old.  My younger sister and I were enrolled in a pre-professional ballet school when I was fourteen and she was thirteen.  Many ballet dancers are already auditioning for companies at sixteen, so my skills were not where they should have been for my age.  But I loved ballet and decided I was going to work harder than everyone else to catch-up.  I just wanted to dance, and nothing was going to stop me.  Dancing was an exhilarating rush of adrenaline, coursing through my veins, and it felt like I was leaping over rainbows.  There was nothing else like it.

I was away at a ballet summer intensive when I got a bad case of Achilles Tendinitis in my right foot.  All of my friends said they had it too, so I brushed it off and convinced myself I was just being weak.  I saw the doctor on campus, and he told me to ice it.  I danced about seven hours a day, and it kept getting worse.  In the final week it was so swollen my shoes barely fit and it had turned an ugly purple-blue color.  I could barely walk, but I still dragged myself to dance class and smiled through the pain. After I came home we went to another doctor, and she confirmed it was a bad case of Achilles Tendinitis.  She instructed me to wear a removable cast, and to not dance until I recovered.

It took over a year to recuperate, and by that time I had started college.  I relapsed into anorexia and depression due to my injury, and I had become apathetic about life.  My mother taught ballet at her own studio and enlisted the help of me and my sister.  A few years later I was in remission from anorexia, and I started to dance again.  I had forgotten how much I loved it.

Then I got married and moved to attend grad school.  I had been dealing with undiagnosed hypothyroidism for the past few years in college, so it took all my energy and willpower to focus on school.  Once the hypothyroidism was treated, I found myself again, and I agreed to help my mom teach ballet.  I had lost all of my flexibility so I diligently stretched for about an hour a day.  It only took six months to tear my right hip labrum, and reinjure my Achille’s Tendon, again.

Ballet was everything to me, and I felt lost and hopeless without it, so I fell into a pit of despair and relapsed into anorexia.  That was five years ago, and at the time I didn’t know I had Ehlers-Danlos Syndrome (a genetic disease causing defective collagen), and that my health was headed for a downward spiral with no end in sight.  Since then I have had three hip labral tears (two hip scopes and an open surgical dislocation), I was diagnosed with degenerative disc disease, and I injured my shoulder.  Some of this is normal to a certain degree, but not in your 20s.  For the sake of brevity I have only divulged my main health issues.  One of my hip surgeons told me that it didn’t matter how well he fixed my hip, I would have to be careful for the rest of my life because I have multidirectional instability.  It was a confirmation of what I already knew.  I could dance again if I wanted to, but I already lost several years of my life, a prisoner to my own broken body, laid up in bed, drowning in sorrow.

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A Picture Taken After My Health Declined

I found writing, and that helped soothe the heartache and gave me a creative outlet to vent my angst.  I don’t miss ballet like I used to.  There will always be a small part of me that wishes I could still dance, but over time it’s been easier to suppress that desire.  I still taught ballet for several years after that first right hip labral tear, but my health kept declining, and it got to the point where I couldn’t demonstrate anything anymore, so I had to quit.  I live vicariously through several of my students, two of which are on the road to becoming professional ballerinas.  I take pride in knowing that I was their first ballet teacher.  I enjoy following their progress and watching them become beautiful dancers.

Five years ago I thought ballet was everything, but as my health declined, I realized there was more to life than that.  It was a hard lesson to learn. . .

In Pursuit of Happiness

The last time I talked to my dad, he kept telling me that he just wanted me to be happy.  We were talking on the phone, and I was trying to explain to him how difficult life has been in the past five years, and that mom was making things worse with her tongue lashings.  So it got me thinking, what is happiness?

Everyone has a different answer.  If this question was posed to my cats, they would reply that happiness is tuna, cat treats, cuddles (only when they want it), tuna, sunbathing, watching birds on the porch, tuna (yes, they love tuna this much XD), and playing with cat toys or each other.

If I were to answer this question about happiness five years ago it would be different than what it is now. Before my health took a steep decline five years ago, I thought that a big house, fashionable clothes/accessories, traveling, dancing ballet, being attractive, having a nice car, and a successful career would make me happy.  These things would definitely bring happiness, some of it only short-term, but how do you find happiness when you are bed-bound for several years with debilitating chronic pain?  Granted, I am well aware there are people much sicker than me because I see them every day in the health forums, but that doesn’t negate my personal struggles.

I actually think I am as happy as a person can be given my circumstances. I was diagnosed with a relatively rare genetic disorder earlier this year, Ehlers Danlos Syndrome, which means I produce defective collagen. Collagen is in basically in every structure of your body. There are several different types of collagen and they are present in different amounts in your body, so there’s a huge range of symptoms and severity with EDS.   I have had three hip surgeries (two hip scopes and an open surgical dislocation) in the past five years, and I’m not even 30. My whole spine is degenerating, and I’m dealing with a shoulder injury right now.  I also have a mildly enlarged right ventricle and several other health issues due to EDS.  I was in so much pain over the past three years that I was pretty much bed-bound.  Not only that, but I would cover my body in icepacks several times a day and lay on a heating pad.  My hip was partially dislocating several times a month for the past year, and afterwards it felt like there was a fire burning in my hip joint for several days.  It usually popped out when I got up from a chair, so I learned to stick my butt out when getting up from a sitting position and waddle like a duck to get it to go back in.  Sounds fun, huh?

The best part is that every time I told myself things couldn’t get worse it did. I suppose fate felt he was being challenged, and I needed to be punished accordingly.  Things are better now since I had my last hip surgery, and I’m in the process of reclaiming my life.  I’m also writing and reading again, and as soon as I get off crutches I will apply for a job.  My husband joked that he was ready for me to be his sugar mommy because my earning potential is greater than 100k/year 😄  Anyway, I made a list of things that make me happy, and I spend most of my time trying to focus on the positive aspects of life instead of the negative.

1.  Cats, lots and lots of cats. I’m not even sure why I love cats, but I just do.  They are so cute, and I love their cattitude :3  I have two cats that mean the world to me, and they are a daily reminder to stop and smile, at least once a day.

2. Chatting with friends and/or my husband. Most of my friends are actually online, but I don’t consider them exclusively online friends. They have provided more love and emotional support that my parents combined over the past five years. I feel very lucky to have such amazing friends.  I have been able to meet some of them, and when my health improves I’d like to meet a few others. A few of them are in Europe, one is in Australia, and the rest are in the United States.  I enjoy spending time with my husband as well, playing video games, cooking, watching a movie, eating out, etc.

3.  Watching or playing video games. I acquired a bad case of rotator cuff tendinitis in Dec. 2012, so I couldn’t play any video games in 2013.  Instead, I watched people play video games online. My favorite Youtube video-gamer is Harshly Critical.  He’s fairly intelligent and has a great sense of humor.  I have been playing video games since I was a little kid, and I love the way you can immerse yourself in their world, and then your problems temporarily fade into the background.  The last video game I played was Tales of Xillia, and I really enjoyed it.  I’m anxiously awaiting Final Fantasy 15, assuming it isn’t vaporware u_u

4.  Cooking for my husband. This is something that I made a real effort to do in 2013. I actually love to bake and cook, but I relapsed into anorexia and shut down five years ago.  I’m now okay weight wise, but anorexia always lingers on the edge of consciousness so I have to be vigilant to prevent it from resurfacing.  My husband is Japanese, and they definitely have a strong food culture. Cooking symbolizes love for my husband, and I enjoy making him happy, especially since he has made so many sacrifices due to my health issues.

5. Writing also makes me happy, but it takes an inordinate amount of emotional and mental energy. Blog posts don’t but writing fiction does.  So unfortunately I wasn’t able to write last year.  It took all the strength I had to keep myself together and not fall apart.  I started writing again a few months ago when I felt strong enough.

6. Reading is another thing that makes me happy, but I did very little of it in 2013 because it takes a lot of focus and concentration to read a book. And I didn’t want to read anything sad because that would only accentuate my own sorrow.

7. A friend of mine got me into nail polish.  A bonus is that it actually doesn’t cost that much money.  When it comes to nail polishes I love holographs, sparkles, and duochromes.  Bright, sparkly colors lift my spirit on bad days.  I think I have 100 nail polishes, which my husband thinks is 99 too many 😄  I tried to explain to him that other nail polish bloggers have like 1000+, but that didn’t change his perspective.

8. I love TV, and I watched a lot of it last year to drown out my negative thoughts. I got Hulu on my phone as well, so that I could listen to it while I was doing chores around the house.  My favorite shows are probably “Law and Order: SVU,” and the “Twilight Zone”.  One of my friends is trying to get me into, “Hannibal,” so we can fangirl together, lol.

9. Music also greatly affects me. Sometimes I like to listen to sad music and cry along whereas other times I enjoy happy and upbeat music.  I listen to several genres: pop, Kpop, Jpop, Jrock, heavy metal, alternative, rock, indie, etc.  Music helped me get through many nights when my pain was so debilitating I couldn’t eat or sleep.

10. I also enjoy helping others and making people happy.  I used to post a ton of reviews on fanfiction.net because I knew how much it meant to authors, and I would make them long and detailed. I also like getting nice gifts for friends. I start collecting gifts at the beginning of the year. If I see something that reminds me of a certain friend, I buy it and then hold onto it till their birthday or Christmas.  I spend a lot of time on hip preservation support forums to help others with hip issues because I know quite a bit after going through 3 hip surgeries.  I want to help people so that they don’t have a failed hip surgery like me.

11.  I love to garden.  We live in a ground floor apartment, and it has ample space for a patio garden.  I have 4 roses, a hanging fuchsia, lots of petunias, a bushy flower plant (don’t know what it is as we inherited it from a neighbor), and dahlias.  Flowers just make me happy, and it is therapeutic caring for plants and watching them grow.

12. I’m Christian, and God gives me a certain sense of tranquility.  I have hardly been to church in the past five years due to the fact I can’t sit for long periods, and if I lay out on the bench or floor people would stare at me.  I should listen to online sermons, but I haven’t.

13.  Another key component of happiness was liberating myself from toxic relationships. I mentioned the problem with my parents in an earlier blog entry. Growing up my mom was emotionally abusive, and my dad was verbally abusive.  My father just told me the other day that he resented me my whole life because I was born out of wedlock, and then he felt he had to marry my mother.  He was also very young at the time.  It wasn’t a big surprise because I already knew. Maybe he told me to absolve his own guilt.  He and my mom almost got divorced last year, and I don’t want to get into the specifics because that is not my story to tell.  But my dad has asked for forgiveness, and he’s making a sincere attempt at returning to God, so I feel like I should forgive him because he’s trying to change. My mother is not trying to change, and she is not sorry for the things she has said, so the past will keep repeating itself.  I don’t deserve her judgement and criticism, so it’s best for me to take a temporary (perhaps permanent) break from her.

If anyone out there is still reading I applaud your efforts 😄  I didn’t anticipate this post to be so long.  I think my dad doesn’t have an interest in most of the things I listed, so it’s hard for him to understand that I am happy most of the time.  If anyone cares to share, what makes you happy?

Orthopedic Nightmare

As far as orthopedic horror stories go, mine is pretty tame.  I’ve interned in ortho so I know how bad it can get, fractures not healing, infections necessitating amputation, multiple failed surgeries, etc.  Mine is nothing like that. . .  But there are varying degrees of nightmares, and while my situation could be much worse, it could also be much better.  I’ve only had one failed scope so far.  What makes my hip complex is that I have several borderline issues working in conjunction to create a dysfunctional hip.  In my case, the whole hip is more dysfunctional than the sum of its parts.

Most doctors don’t understand what is wrong with my hip, so they recommend another hip scope.  The scope doctors that could actually see what was wrong want nothing to do with me.  The dysplasia doctors that understand don’t really know what to do  with me.  Ehlers-Danlos and a previous failed scope make the issue even less clear.  This is why I had to spend months reading research articles and scouring hip forums to learn as much as I could so that I could make an educated decision on what was best for my hip.  I’ll show you a picture of my CT and you can take a guess at what’s wrong. I’ll give you a hint, the left hip is fairly normal while the right hip isn’t.

Anterior View of CT

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Posterior View of CT

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When this hip journey started 5 years ago I had no idea hips were so complicated.  I was 24 years old at the time, and was relatively healthy, or so I thought.  I had my right hip scoped in March 2010 with a doctor at UCSF who told me I did not have FAI or hip dysplasia.  I had no reason to question him.  I thought doctors knew everything, at least he knew a lot more than I did about hips.  The only thing he did was debride the labrum.  I had a very long recovery, longer and more painful than normal.  I was in a lot of pain until about 15 months post-op, and then my left labrum tore, making the pain on the right kind of negligible.  The left hip had FAI, and that is a story for another day.

I thought the right side was permanently fixed, but I was in for a nasty surprise when my right labrum retore in August 2012.  I was doing a passive external rotation stretch, aka the butterfly stretch.  Unlike my first labral tear on this side, this time it tore so easily I couldn’t believe it.  Within one week my pain shot up from 0/10 to 8/10.  I couldn’t sleep or eat because the pain was so bad.  I remember I had a doctor appointment that week and I was sitting on the floor bawling.  My blood pressure, which is usually 100/70 was 155/130.  It hurt like hell, and I knew exactly what it was because I had torn my labrum twice before this.

I had my left hip scope in November 2012 for FAI and a labral tear.  I joined some hip forums shortly after that for support.  I thought I had residual femoral-acetabular impingement on the right side, so some of the girls advised me to send my films to Dr. Philippon.  Dr. Philippon’s assistant called me and told me I needed a PAO, not because I had hip dysplasia, but because my socket was too anteverted, and it needed to be derotated.  I remember thinking, ‘What is he talking about?!’  Dr. Philippon seemed pretty certain I wasn’t a hip scope candidate.  He referred me to Santore, but Dr. Santore is out-of-network and like 400 miles away, so I didn’t see him.  After getting off the phone I cried for a few hours.  A PAO (short for periacetabular osteotomy) is where they break your pelvis to give your femur more coverage and/or reorient your socket, and it’s as gruesome as it sounds.

Instead I consulted 10 hip orthos (both hip scope and dysplasia surgeons) either in person or by film review, and 1 knee surgeon specializing in rotational deformities between Jan. 2013 to Feb. 2014.  I had consulted two hip surgeons prior to my first hip surgery, so that makes it a total of 13 orthopedic surgeons I either saw or did a film review with.  I got a lot of conflicting opinions, so it took me a while to find a doctor that was willing to help me and understood what was really going on.

I have EDS, a shoulder injury, and a degenerating spine in addition to my bad hip.  I was in excruciating pain as I took trips to Chicago, Boston, Tacoma, and New York City seeking answers.  Because we didn’t have much money, I traveled alone and carried everything in a backpack, so I only stayed in a hotel overnight and went from the doctor’s office directly to the airport.  Carrying a heavy backpack is not good for a shoulder injury, and sitting for long hours is not good for a back and hip injury.  On the way back home I was laying down on the dirty airport floor, and I didn’t even care.  It was grueling, but I needed answers, and I needed my hip fixed. Due to the EDS I recover badly from any surgery, so another failed surgery would be another few years of pain and disability.

This is a short summary of some of the doctors I consulted.  Dr. Kelly and Dr. Philippon both refused to scope me, which means I’m probably not a scope candidate.  They are two of the best scope surgeons in the world, so I took their advice seriously.  Dr. Philippon referred me to Dr. Santore, and Dr. Kelly referred me to Dr. S.  I had also contacted Dr. Ganz and sent him my films, but he’s in Switzerland so I knew I couldn’t have surgery with him.  Dr. Ganz is the godfather of hip preservation and the PAO that is done on adults is also known as the Ganz osteotomy because he created that specific osteotomy for adults with hip dysplasia.  That is how desperate I was for answers.  He suggested an FO and/or PAO based on the physical exam and cartilage damage present.  Dr. M wanted to do an open capsule plication, and if that failed an FO, and if that failed a PAO.  Dr. Mayo wanted to do a derotational PAO and Dr. S wanted to do a derotational FO and told me that hopefully I won’t need a PAO later on.  Two other scope surgeons I saw wanted to do a scope.  One scope surgeon said she didn’t do revisions, and referred me to scope specialists.  And two dysplasia surgeons told me I was a scope candidate.  A knee surgeon specializing in rotational deformities suggested an FO based on my angles.

So what was wrong with my right hip that had all these top hip surgeons giving me different answers?

  1.  Femoral version of 28 degrees, which is high, but they generally don’t start derotating femurs until version is greater than 30 degrees.  Normal is about 10-15 degrees for femoral version.
  2. Acetabular version of 29 degrees, which is high normal.  The normal range for acetabular version is about 15-20 degrees.  Not enough by itself to warrant a derotational femoral osteotomy.
  3. Lateral center edge angle (aka lateral CE) of 24-26, which isn’t dysplastic, but it exacerbates the borderline version problem. A normal lateral CE is 25-40, and 20-25 is mild dysplasia.  I have an Anterior CE of 28-30, when 20-50 is normal.  Let’s just say I don’t have much lateral coverage to spare, especially given the version issues.
  4. McKibben Instability Index (Addition of Femoral Version and Acetabular Version) of 57, and they generally recommend a derotational osteotomy when McKibben Instability Index is greater than 50-60.  The pathology of a high McKibben Instability Index mimics hip dysplasia in the fact that the femur lacks coverage and causes static overload.
  5. I have Ehlers-Danlos Syndrome, and my last hip surgeon did not even close the hip capsule.  It was deficient on MRI, exacerbating the anterior instability from version issues.
  6. I have a labral deficiency in the front where my last surgeon cut out the labrum and a hypertrophied and ossified labrum in the back.
  7. Due to the rotational issues, I have posterior impingement, which causes anterior sublaxation and posterior impingement in external rotation.  This is how I retore my labrum.  My first injury was from ballet.  Due to my excessive anteversion I lack external rotation and ballet requires extreme external rotation. I retore my labrum with an external rotation stretch.

It took a hip genius to look beyond the numbers to understand the true pathology of my hip.  Two of the scope surgeons I saw believed that my right hip had anterior pincer impingement so they were going to shave off bone from the lateral and anterior hip socket.  Then I might have been dysplastic.  It’s scary how easily I could have had another failed hip scope.  And failed scopes aren’t necessarily benign.  I had no arthritis in my right hip five years ago.  Now I have mild joint space narrowing apically and posteriorly.  My last scope surgeon did me a favor by not shaving off any bone.  But debriding my labrum (when it was healthy enough to be repaired) and leaving my capsule open destabilized my hip.  I started sublaxing a year ago, and that hurts really bad.  It usually happens when I get up from a sitting position.  I can hear a pop or a sharp pinch and it feels like my femur isn’t in the socket.  I hate it.  So when I get up from a sitting position I have to stick my butt out, turn my feet in, and waddle to get my hip to go back in.  My hip didn’t hurt too bad at the beginning of 2013, but it’s very painful and disabling now.  I have to wear ice-packs every night to sleep, and it’s still difficult even with that.

Hips are like a puzzle.  The great dysplasia surgeons are very good at hip puzzles, but there was not one solution in my case, so I had to choose which solution made the most sense.  I’m glad I had learned so much about hips on my own because I needed every bit of that hip knowledge to make the right decision for my hip.  Dr. M had a good understanding of my hip, but he was more conservative than Dr. S and Dr. Mayo, and I didn’t want to be conservative because I tried that already and it failed miserably.  I would recommend Dr. S and Dr. Mayo to everyone because they were just awesome.

Right now I’m battling Anthem Blue Cross PPO to cover Dr. S at an in-network coverage level because my only other surgical options are a scope, or an open capsule plication.  The rest of the hip dysplasia surgeons in the country are either less experienced than Dr. S or are also out-of-network with Anthem Blue Cross.  I’ll write about my insurance battle in another post because that is also a very long story.

The Road Not Taken

I’ve always loved Robert Frost’s poem, “The Road Not Taken.”  As a child I found it especially poignant because I empathized with the character that agonized over which road to take.  When you are young there are so many possibilities that it is hard to make that sort of decision.  As a child I dreamed of being lots of different things, including a dentist, princess, architect, writer, dancer, vet, or physicist.  I blame the Disney movies for making me think it was so easy to become a princess, lol.  Although as you grow up, the possibilities start to narrow and the choice about which path to take becomes more clear.

In high school I was very focused.  I graduated with a GPA of 4.25 and was a valedictorian.  Then I went to college and got my B.S. in Chemistry from UC Berkeley. I taught ballet on the weekends with my mother to help put myself through school.  After graduation I married a nice, intelligent, hard-working man.  I went on to one of the nation’s top tier pharmacy schools.  I studied very hard in pharmacy school and achieved a 4.0.  I was planning on doing a residency after pharmacy school and then starting a family.  I thought I did everything right.  But at 24 years old my life came crumbling down, and I’m still trying to put the pieces back together, but the current figure bears no semblance to the original.

What happened?  I got my first hip labral tear at 24 years old from a ballet injury, which was only the beginning of my journey with hip problems and chronic pain.  I went from a normal person to being in so much pain I could barely sleep or eat.  I couldn’t make it to many classes because sitting in a chair induced severe pain as well as standing.  I had a BMI of 18, but it dropped down to 16.5 because I lost 25 pounds.  The pain of hunger barely compared to the pain in my hip, and I ceased to be hungry.  I did manage to graduate pharmacy school and get licensed.  I thank God quite often that I was able to do that because my health issues made the last 1.5 years of pharmacy school very challenging.  I had to work 60-80 hour weeks with a bad hip.  To this day I don’t think any of my pharmacy classmates knew what was going on.  I simultaneously had a bad case of Achilles tendinitis and wore a removable cast, so I think some of them thought that was the extent of my health issues.   There were only 120 of us, so we were more like a high school class than a college one.  I was ashamed and embarrassed about my hip problem, so I just didn’t talk about it unless someone was a close friend or family member.

It’s a bit ironic that at 24 years old I thought things couldn’t possibly get worse, but they did.  One thing I have learned is that it doesn’t matter how bad your situation is, it can always get worse.  Multiple joints started deteriorating and I’m not even 30.  I was recently diagnosed with Ehlers Danlos Syndrome Type III (hypermobility type), a connective tissue disease, causing defective collagen.  It’s an autosomal dominant genetic disease meaning I was born with it.  Collagen is in pretty much every body structure, so the health effects can be widespread.  People with severe cases often have a major cardiac or other organ problem before they are even 40.  I’ve had health issues throughout my life related to this, but nothing major until 24.  I’m 29 now so I’ve been dealing with chronic pain for 5 years now.  My sister does not have it, thank god.  I’m pretty sure I got it from my mother, and she got it from her mother.  Both of them are undiagnosed at this point, and since my maternal grandmother is dead, I will never know for sure if she had it.

Although unlike the character in Robert Frost’s poem, I didn’t really CHOOSE the less traveled path.  More like chronic pain held a gun to my head and forced me to walk down the alternate path.  I begged and cried as I was forced down a road covered in implacable darkness, but chronic pain has no mercy, so I used every bit of strength that I had to keep walking all the while hanging on to the hope that I might eventually escape his grasp.  Unfortunately, I never will.  Because of the EDS I will likely never have another pain free day until I die, and that was a very difficult thing to accept.  I will have ups and downs, but my joints will get progressively worse.  Right now I’m going on my 3rd hip preservation surgery and Dr. S at Hospital for Special Surgery is going to be my surgeon.  I had different surgeons for the other hip surgeries which I will explain in another entry.  I’m scheduled to have an open surgical dislocation + femoral derotation (secured with a blade plate) + capsule plication +/- hip labral repair and/or labral graft +/- posterior impingement removal.

After 5 years of debilitating chronic pain, I am finally learning to accept it, and I can see a glimmer of light towards the end of the path.  Chronic pain will be with me until the day I die, but I am trying to learn to work with him instead of fighting for control because pain will always win that battle.  So that’s where I am right now.  I realize no one is probably going to read this, but I hope I can help others and let them know that they are not alone.  Being young and struggling with a debilitating illnesses or injury is very difficult because people often have a narrow minded approach to what someone with chronic pain or illness looks like, and a young healthy APPEARING person doesn’t fit the criteria visually.  I’m hoping to spread awareness of EDS, hip problems, and other health issues with this blog.  Chronic pain is not who I am, but it has become a huge part of my life.  There may be entries in the future about cats, video games, writing, gardening, nail polish, or makeup because I have lots of interests that don’t include hips or EDS.  Did I mention cats? 😄  I have two kitties, and I love them so much.  I’m hoping to have kids in the future, but my kitties will always be my fur babies :3  I have more pics of my cats than I’m willing to admit, lol.

I’ll post a picture of me below because I think it’s important people see what someone with chronic pain looks like.  The smile is nothing more than a facade to hide the tears.  I can pretend I’m fine, and I like to do that in pictures.  I’m holding a Cloud plushie from the video game Final Fantasy VII, one of my favorite video games.

This is a picture of me after the chronic pain started.

This is a picture of me after the chronic pain started.