John 15

John 15
‘I am the vine, you are the branches'

Tuesday, September 30, 2014

Massage -- A costly necessity

For me, massage has become just as important as food. I count the number of days between massages just like I count the number of days between my cheat meal.  In my 20's I was a bodybuilder (non-pro), so I know what "tight" muscles from a good workout feels like.  So, let me just express that tight muscles caused by dysplasia is nothing like having tight muscles from a kick @$$ workout. Don't insult me by even trying to compare it. Done that, been there, NOT THE SAME.

Tight muscles from working out make you feel solid and strong. Tight muscles from dysplasia cause weakness, instability, refereed and radiating pain, and the list can go on.... so see; it's separate. Massage is as much of a necessity as is dry needle therapy and trigger point injections.  However, not just any massage therapist will do.  I've tried those that work at the chain massage companies and they are limited not only with what type of massages they can perform, but also with the tools and technique that they can use.  Find someone that is independent and is able to tailor your session based off of your needs.

I have been with my massage therapist since 2010.  She has been with me prior to my symptoms of dysplasia setting in, through pre-diagnosis to post diagnosis.  She is as important to me as my pain management doctor is.  I could not live without her.  I would seriously have a breakdown if she chose to either move or not do massage anymore.  I have had fill ins in her absence and they don't even come close.

A good massage therapist will research what it is that ales you and be willing to try different techniques. That is what mine does.  She has taken the time to research dysplasia and what it can cause.  She knows how much pain I am in.  She can feel it in my muscles.

So, let me be franks.. to make it to surgery and after, find yourself a good, independent massage therapist. If you don't have connections, then I would focus on finding a medical massage therapist or one that's trained in myofascial release. Also, I would inquire as to what additional training and courses that they have.  You want a massage therapist that seeks continued education for obvious reasons; relief.  The more areas that they are trained in, the more likely they will find something that works for you.

Thanks to my amazing massage therapist not giving up on me, we have found what works and doesn't work.  Massage cups are awesome. They help to reduce inflammation and to loosen up my very tight areas so it's not as painful as she works the trigger points out. Otherwise, I am death gripping the massage table.  Magnets are also a nifty little tool that helps to break up inflammation and reduce tension within the muscle.  She used those one me for the first time today.  I noticed a huge difference after use.

Of course, because my muscles are imbalanced due to the dysplasia, this is a non-stop battle until I have surgery. I could get a massage every week, and for awhile I was, but since learning some techniques to manage on my own, I am able to cut down to twice a month. Massage helps bring blood and oxygen back into the muscles.  This helps them to stay relaxed.  When paired with trigger point injections/dry needle therapy, the results last even longer.

Thursday, September 25, 2014

Symptoms of Hip Dysplasia, Hip Labral Tear and Myofascial Pain

For those that have read my blog from the beginning, my symptoms likely jump out at you. But for those that have just been recently diagnosed, I wanted to write a specific blog detailing my symptoms.

Prior to April of 2012, I did not have any symptoms of hip dysplasia other than my ability to make a popping sound near my groin as you would cracking your back or neck.  I didn't suffer from lower back, gluetus, legs, or knee pain.  I have always led an active lifestyle; former rock climber, diver, runner, weight lifter, swimmer, and crossfitter.  I thought I would be one of the few that would grow into old age without a hitch.  Actually, I was pretty confident of it.  Looking back, I think we all think we are invincible.



When the symptoms started, they hit fast and I quickly went downhill.  There was no gradual decline, it was an avalanche. The take down and tease... I can honestly say I have more bad days than good.  I have learned to just embrace it.  As for the pain, my symptoms can be broken down into two categories, one causing the other.  For me, the main category is hip pain, secondary to that is myofascial pain.

My hip pain...  I have had a constant deep throbbing/ache sensation around my inner groin which wraps around where my thigh intersects with my lower torso and travels to the gluetus muscles and up my lower back.  I also have weakness and shooting pain when stepping out of the car and going up or down steps. When doing those movements, I have to hold on to something since my leg gives out. I also have problems with my reflexes and pivoting. This has been a major problem for me, especially in stores since I am unable to stop if people cut in front of me and often bump into then.  I am also unable to pivot and turn without causing pain. Flexing and extend my leg in certain ways causes sharp pains along with a catching/ clicking sensation.

Next is my myofascial pain caused by the dysplasia and tear (Myofascial pain is discussed in more detail in my Dry Needle Blog).  Because my hips are off, this causes the wrong muscles to fire. These muscles then tighten up because they were not designed to support my hips causing trigger points. These trigger points cause an immense burning sensation within my muscle along with muscle spasms.  At time, the pain can be a deep ache or a radiating hot spot.  When touched, the spots are extremely sensitive and painful to release.  When my muscles become extremely constricted for an extended period of time, they start to feel like someone is winding them like a rubber band with no release.  I can feel the muscle pulling when moving in certain ways. This then causes the muscle to improperly pull on other bones and ligaments in my body causing referred pain.

Needless to say, my mobility has been greatly affected.  I can no longer run, bike, -- let's me honest, I can no longer do a lot. I have to ration the number of steps I take in a day and if I go over, I pay for it. It then takes me a good 2 to 3 days of resting, heating, rolling, and doing trigger point work to get the pain under control again. Sitting, standing or walking for anything over 30 minutes causes pain.  I continuously have to shift my position to alleviate the pain. Carrying heavy items also trigger more pain.  Therefore, I don't do it unless I have to.  Bending over and squatting are also a no no... It aggravates the entire hip area.

I drive in my car with my seat heaters on regardless of the weather. I have foam rollers and heating pads all over my house.  Tiger balm is my best friend and I am constantly checking amazon for the latest trigger point balls. I don't wear fashionable shoes anymore because they make the pain worse.  I should own stock in Epson salt for as much as I buy and the bathtub has become my 2nd favorite place, the first is my BioMat.  I rely on dry needle therapy, trigger point injections, massage, and acupuncture to help me get through until surgery and having bad hips really does cause a person to go broke.  Any extra money I have is spent on managing the pain.  No new cool outfits, salon visits or shoes.  That stuff doesn't matter to me anymore. Not being in pain is what matter now.

I am sure there are more symptoms that I have, but those are the most obvious.... as you read through other people's blogs, you may notice that we all experience the same type of pain.... people just use different context to describe it. It also makes me wonder how so many doctors miss this with the symptoms being so obvious and consistent between patients and unfortunately, most of us have suffered far longer than we should of had to.






Wednesday, September 24, 2014

Injection Day -- Pain Managment

Prior to my symptoms of dysplasia setting in, my perception of pain management was grossly inaccurate.  I held a false misconception that pain management doctors would magically erase a persons pain. It wasn't until about 4 appointments in that I understood the obvious truth behind the name. Pain MANAGEMENT... not pain go away, pain be gone, but pain management. I can be like that, overlook the obvious.

I really despise crying. It makes my face all read and puffy and then it takes hours for my face to look normal again. And what do I end up doing during my initial consult with my pain management doctor? Cry... lots of tears, gushing, non controllable tears. Thankfully, the smarter half of me had already written out my injury and symptom timeline and gracefully gave that to him while I got myself back together with the box of sandpaper kleenex. Fast forward to 4 appointments later, first diagnosis of hip labral tear, and that's when the realization hit; this pain be gone with a few Alieve isn't going to happen for me, I have officially entered the Pain Management Club.

I hate narcotics... my mind is already loopy enough, I don't need to add it to with some drug.  They also make me itchy and wired.  Lovely combination when in pain. NOT. So, when it was time to decide on a treatment route to manage my pain until surgery, we had to get creative.  We settled on a combination of drugs that were non-narcotic plus weekly trigger point injections (http://www.webmd.com/pain-management/guide/trigger-point-injection).

Trigger Point Injections is similar to dry needle therapy in that it targets the taunt muscle bands. However, there are some major differences. Dry needle (DN) therapy is usually done by a trained Physical Therapist (PT) whereas Trigger Point Injections (TPI) are done by a PA or doctor. The next difference is the type of needle used. TPI uses a needle that contains a local anesthetic, saline or corticosteroid. DN therapy used a thin filiment needle, similar to those used in acupuncture.

From my experience, I find a trained Physical Therapist to be more successful at treating trigger points. This is because they have a better understanding of referred pain patterns and how to palpate the muscles. They also know how to position your body to get  maximum muscle coverage for trigger point release.  Because the needle is very thin, they are able to maneuver the needle better while in the skin causing multiple twitch responses.  A twitch response is the muscle reacting and releasing. Depending on your pain tolerance, an experienced PT in DN therapy can hit a large number of Trigger Points in a relatively short amount of time.  This is important to understand because in 99% of cases, the same results are not achieved with TPI's. Because most doctor do not have the same schooling that is required for dry needle therapy, TPI's can be hit or miss. Also, because the needle is thicker for injections, they are not able to maneuver like in DN therapy which reduces the potential number of twitch responses. However, once they do hit the muscle, the twitch response is not as painful because of the lidocane.

Lucky for me, I have a good doctor that is skilled at giving injections.  Lucky for him, I am neurotic and premark myself on injection day.  After getting dry needle therapy twice a week since January, I have a pretty solid idea of where my trigger points are and what areas need to be injected. I find this to be the best method since I have many trigger points, they are all painful, and neither of us want to prolong the torture.

As for my pain,, half of of my pain comes from my hip and other other half is from trigger points caused by my funky hips. It's all about the hips.... The medication helps to treat the pain caused by the hips and DN and TPI are used to treat the pain caused from trigger points because of my hips.

So, you may wonder why I get both dry needle therapy and trigger point injections.  The main reason I get injections is because insurance has recently denied DN therapy for me.  The 2nd reason is that the injections do last longer on the larger muscle groups, like my quads.  However, dry needle therapy works better in more sensitive areas like my abductor muscles. I have tried to pair the 2 therapies together to best manage the pay for my situation. So yes, I pay out of pocket for dry needle because it works.

For your casual viewing pleasure, I have attached a photo showing what my very colorful dotted leg looks like on injection day. The scar is from my muscle biopsy and all the pink dots are trigger points in my leg.  I also have additional dots, in the upper hip, groin and backside area not seen.  On my injection days, it takes me a good 45 minutes to an hour to map all the trigger points out on my leg.


And because I have talked so much about my leg atrophy, below is a picture showing the amount of muscle I have lost in my left leg from this ordeal. It's quite noticeable.





Tuesday, September 23, 2014

Myofascial Pain and Bad Hips -- Dry Needle Therapy as a Non Narcotic form of Pain Management

I am EXTREMELY PASSIONATE about dry needle therapy and feel it is an important pain management modality to discuss.  It wasn't the specialist that kept me off of pain pills, it was my dry needle therapist.  At the onset of my symptoms, I could barely walk or put pressure on my leg. Numerous dry needle sessions later, and I mean numerous, he was able to loosen the majority of muscles that had tightened up around the injured area relieving some of the pain (I will go into my many symptoms in another blog post).

Sadly, not enough people, doctors and patients, know about dry needle therapy and the benefits one can receive from it. The cliff note explanation of dry needle therapy is where a filiform needle is inserted into the skin and muscle directly at a myofascial trigger point.  The inserted needle triggers a "twitch response" in the muscle causing it to release.  For a more detailed explanation, I strongly encourage you to read the resource paper, provided via the link below, which discuss dry needle in depth:

http://www.aaompt.org/documents/DryNeedlinginPTClinicalPracticeEducationalResourcePaper.pdf

Prior to diagnosis, none of my specialist agreed on anything.  However, after diagnosis, and being connected with the right doctors, the puzzle pieces started to click together.  My physical therapist explained that because my femoral head does not fit correctly in my hip socket (also known as the acetabulum), the chemical messengers that engage the neurotransmitters in my brain are told to fire the wrong muscles.  Instead of the gluetus minimus, maximus, and medius firing, all the muscles in the front and inside of my leg fire instead.  This then causes trigger points resulting in immense pain in my inner groin, knee cap, hip line, and lower back area. The hip and pelvic area are meant to stay in place through the use of your gluetus muscles.  In my younger years, I was able to keep these muscles forecably strong through exercise.  However, as we grow up, get a job, sit for longer hours, and age, we lose muscle mass and then problems occur. After repeated misfiring, my front and inner leg muscles could no longer take the weight causing trigger points in those muscles leading to pain. This is known as myofascial pain.  Myofascial pain can be caused by injury, repetitive movements, mechanical issues, structural issues, stress, and more.  To learn more about myofascial pain, I also strongly recommend reading through Devin Starlynal's website http://homepages.sover.net/~devstar/. She is one of the first pioneers when it comes to understanding myofascial pain and trigger points.

In my case, I use dry needle therapy to release constricted muscles in the affected area while doing specific exercises targeting the gluetus muscle causing those muscles to force fire keeping the stress of my other muscles.  Many traditional Physical Therapist do not understand myofascial pain and trigger points and at times, can cause people more damage by trying to strengthen a constricted muscle.  YOU CAN NOT STRENGTHEN A MUSCLE IN AN ALREADY CONSTRICTED STATE.  This will make the pain and damage worse. The trigger points must be taken care of first before strengthening affected areas.

Theoretically, once I have the PAO surgery, my body should then tell the correct muscles to fire. However, until I have surgery to correct the dysplasia, all my muscle issues, atrophy, pain, instability, and weakness will continue to be an issue for me.  My left leg is significantly weaker than my right. One could also see the visible atrophy caused by continually constricted muscles.  Muscles that stay in a constricted state due not get oxygen eventually causing neurological atrophy.

So, now that I've tried to weave my very complicated story together in one really long blog post, what I am hoping others take away from this is that the body will compensate for imbalances.  There are other forms of pain management and rehabilitation other than the traditional narcotic route.  If you are experiencing pre-surgery pain or post surgery pain, I strongly recommend finding a dry needle therapist in your area and asking for an assessment.  It won't be the end all, as it may take multiple modalities, but it can help alleviate the pain, restore functionality, and improve healing.  

Parenting in Pain

Pain, such an ambiguous word until it affects you.  It can grip you lightly like a feather dusting your cheek or it can take you down to your knees in agony.  Then there are the middle grounds of pain neither light or acute, but debilitating enough to change how you navigate through life.  Perceived normal is no longer normal. Basic tasks become become an undertaking.... but parenting in pain will cause you to question your every value, motive, thoughts, and goals.  It will change you and your family forever.....    

I could make this blog posting something utterly and completely negative and go on mourning the devastation that I feel as a Mom.  I could fill this page with all the I can'ts...  But what purpose would that serve? To further enable and define my situation? What would that teach my kids? To let situations hold power over you? No, I want to teach them that regardless of our situation, we have power over how we allow it to affect us. 

Parenting is hard enough, but parenting while in continuous pain elevates parenting to an entire new level.  Parenting in pain will bring tears, many tears. But through tears comes strength.  Strength breads change and change leads us to new beginning.  I have many new beginnings in life and parenting in pain is one of those new beginnings.

Prior to the onset of my labral tear and dysplasia symptoms setting in, I was an on the go, on the move, had to do, wanted to see, needed to move, to run type of person. I loved taking the boys out; especially if it involved new experiences for them. Having to sit and slow down was foreign  territory.  Sitting brought much confusion to me the first few months.  I did not embrace it, I fought it. I pushed myself causing significant more pain as the day wore on and each time I pushed myself the recovery was longer. Each day that passed with no improvement chipped away at me until one day I realized I must see the light in this or fall into a hole of darkness and resentment...

Slowly, I tried to learn how to parent and interact with my kids at a slower pace. Puzzles became our favorite winter activity.  I am not talking about 100 or 200 peace puzzles, but 1,000 peace puzzles.   Many of nights my kids would come and go; each helping at different times are all together. Conversations that I never would have prior to this occurred.  Not that I don't talk to my kids, but this experience has allowed us to communicate on a different level, a slower level; giving them the chance to talk in a non rushed/on the go adrenaline pumping environment. 

On the flip side, kids still need to move and run.  The biggest challenge for me was and still is how to do this without causing myself too much pain before  leaving the house. The do-it-all hat had to be hung up.  In order to make this work, the areas that they were responsible for had to increase.  They wanted to go out and do things, but yet preparing for an outing was too much for me. They quickly learned if Mom was going to take them out, they must do more on their own and guess what. THEY DID... without a whine or complaint, they gladly picked up where I couldn't. At first this crushed me, but stepping back, I learned to embrace and appreciate their ability to be independent. They quickly became responsible for packing their own day trip items depending on that days activity.  They knew if they packed nothing but junk for snacks we LEFT.  That simple. Do it right, no games or the privlidge is lost.  

Bottom line, kids are really amazing.  Today's society definitely under-estimates their ability. Through patience, my husband and I were able to teach our kids at an early age to do laundry, unload the dishwasher, mop, and a few other basic tasks to keep the family running.  With the start of the school year, they have also become responsible for packing their own bags; snacks, drinks, after school activity gear, etc.  These changes have empowered them knowing they are contributing to not just the family, but themselves.   

Parenting in pain is not easy and if you let the pain take over, it can tear your family apart. I spent many days being sad, angry, upset and distant.  I had to accept my situation and get my mind past the stigma that I put upon myself.  Once I did, the anger receded and joy slowly started to come back.  To win the mind battle that constant pain will put you through, you must first accept your situation and then be willing to change not only the way you do things, but how you see the world. It's our inner views and self imposed labels that cause inner turmoil.  Once we stop labeling our feelings and thoughts, change can occur and we can grow positively in any situation life throws at us. 

Monday, September 22, 2014

The Specialist Voyage

August 28th, 2014 was my scheduled visit with Dr. Olson, a hip specialist at Duke Medical in Durham North Carolina. Not everyone with dysplasia is eligible for a PAO; severe osteoarthritis, age, and weight can all disqualify a person. This appointment would essentially decide whether or not I was a candidate for PAO surgery. 

After reviewing my history, symptoms, and films Dr. Olson confirmed that I would qualify for a PAO.  He also explained that he was 1 out of 4 surgeons in the US that could combine both the PAO surgery and arhroscopy to fix my labral tear whereas most surgeon perform 2 separate surgeries.

A sense of peace came over me that day leaving the hospital.  All the fighting, research, and 2nd opinions finally led to not only an answer, but treatment. To the right is a snap shot of my x-ray to include measurements annotating the degree of dysplasia.   No more wandering down the yellow brick road having specialist after specialist try and figure out what was wrong with me.  No more trying to fight obstacles and discern the range of information each specialist was telling me.  I had an answer and more importantly, now my husband and I have a goal.

Sunday, September 7, 2014

Compounding Diagnosis

Nine months into this mysterious journey of pain, atrophy, weakness, and instability I have hope. August 9, 2014 I had a 2nd consult with a a highly recommended top rated hip orthopedic surgeons in the Hampton Roads area to discuss what I thought would be an arthroscopy to fix my labral tear http://orthoinfo.aaos.org/topic.cfm?topic=A00572.

Appointment day comes and I'm nervous knowing this appointment could possibly be my turning point.  His staff takes additional x-rays and 9:30 on the dot he comes in.  A few awkward and painful leg bends later, a quick look at my x-ray, and he informs me I have bilateral hip displasia.

I smile a real big idiot smile because now there's even more reason for my pain.  I AM NOT CRAZY! As he started explaining what hip dysplasia was and what my options were, the smile was smacked right off my face as I realized options for this condition were limited.

1. Continue with pain management until I could have a Total Hip Replacement (THR)
2. Fix the labral with the risk of it tearing again
3. The most aggressive; have a surgery known as PAO.


For the first time in 13 years, my husband and I were both speechless at the same time.  He continued to explain that he is not qualified to do a PAO and recommended that we see a surgeon that does them on a routine basis.

I was speechless leaving his office that day.  I have no recollection of the drive home or what I talked about with my husband. I was angry, down right angry. I was angry that so many doctors missed this diagnosis and even more angry that the first hip specialist missed the dysplasia.  Had this been caught back in April during my 2nd appointment with him, I could be sitting home recovering from surgery right now. Anger welled up in me all weekend and I just cried. Cried for time lost, cried that I had an answer, and then cried even more that there is a fix, but not a simple one.

Friday, September 5, 2014

PAO Surgery is not for the meek

I see a trend amongst those people who have decided to pursue a PAO surgery.  We look fear in the face and don't quit. We don't give up, we don't give in... we keep digging, we keep going. To even think about having a PAO surgery takes the personality of a fighter, a winner, an over-comer; not the meek. There are no I can't do attitudes.

I say this because the surgery itself is a 4 hour surgery and requires anywhere from a 4 to 6 day hospital stay.  For the first 8 weeks, little to no body weight can be placed on the operated leg. Most people can walk unassisted after about 4 to 5 months and full healing occurs around 9 months to 1 year. 

People not willing to fight for their mobility back would not go through this surgery.  People not motivated to be dedicated to PT would not go through this surgery.  It takes a burning desire to return back to life to put yourself through such an evasive surgery and lengthy recovery.

I have had such a pleasure getting to know some of the PAO board members and through their postings have realized they are all fighters. They don't quit. They persevere and push through. They choose to see the light in the darkness, the joy in the pain. They choose to fight their way back day by day after surgery in hopes of running that 5K or marathon again, to run with their children, to continue excelling in their career.  

I have posted a journal article and an animated video under my links tab explaining what the PAO surgery is and how the procedure is done. I have tried to not post anything overly graphic.




Chronic Pain-- Midlife

Your 30's is such a pivotal age in life. The majority of American's are normally married by this age, possibly with young children all while trying to climb the ladder in their professional career. You rely on your health in order to achieve all that needs to be done.  The care-free life of the 20's is now gone and in your 40's life becomes more secure.  You don't think in your 30's what if my health... That thought just doesn't enter your mind.  That happens to older people... like 60ish on... but not in your 30s.

Minus having to battle to find a diagnosis, the hardest impact of having chronic pain in my 30's is that this is the time I am supposed to be running with my kids in the park, building on my career, long leisurely date nights with my husband, and enjoying the knowledge that I have gained from the last 15 years, but with the mobility of a 20 year old. 

So after month 5 of being in pain with the same symptoms and frequent relapses, I started freaking out. None of the doctors seemed to agree or understand what was happening to me.  At one point, I had to question if this was all in my head and was having a mental breakdown in my 30's vice 40's.   My only saving grace is that there were positive tests showing abnormalities along with visual atrophy and muscle spasms proving this was not all in my head.

So, when month 5 came and went with no answers and still in pain... I really started to struggle. Anyone can set their mind right and push through situations, but to go through a handful of specialist and come out empty handed, I think that would screw with anyone's mind; especially if it affected their mobility.  I became even more pissed off.  This is the middle of my life when everything is supposed to be happening; career, kids, activities....

Chronic pain midlife makes you feel cheated.  To have pain in your 30's is unheard of... not the norm. As much as I can blame genetics for my dysplasia, I am also grateful to genetics for my stubbornness and perseverance attitude. Throughout this entire situation, I never once thought about giving up or succumbing to the pain. I would research on the computer for hours ways to manage my symptoms. I tried alternative therapies.

One of my more favorite inspiration videos is "How Great You Are"
https://www.youtube.com/watch?v=_7I7iasuIdw&list=LL2I8TJfgYco1kcNNH4_8tOQ&index=9

The world isn't all sunshine and rainbows
It is a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you permanently there if you let it.
It's not about how hard you hit, it's about how hard you can get hit and keep moving forward, how much you can take and keep moving forward

Those words resonated in my head every day...  it's about how hard you can get hit and keep moving forward.

Chronic pain midlife can ruin your life if you let it. Life will find a way to knock you down.  It's your choice if you choose to get back up. I chose to get back up and fight, and keep pressing, keep digging, and not let the doctors define my treatment plan, not to let the pain put me in a state of despair. I wanted an answer and I had to dig and push to get it. Had I accepted the answer my neurologist gave me, I would be on a pile of pain pills still without an answer.

 Prior to receiving my diagnosis, I had already resolved in my mind that I may have to restructure my life and define an new norm.  Now that I have my diagnosis, I have a goal.  I know that the rehabilitation portion of my surgery will be long, but the truth at the end of the day is that I did everything that I could do to fight for my mobility back, for my life, for the remaining years in my 30's and on.  I am not a coward and I will continue to fight for my family, my husband, my children, my career, and my friends.  I will choose to smile and not give in... for what would I be showing my kids? To let life take you down? No, I am choosing to teach them that each obstacle has a choice- I am teaching them to be strong and in this walk with me is the ultimate creator, God.


Isaiah 40:31

But those who hope in the LORD will renew their strength. They will soar  on wings like eagles; they will run and not grow weary, they will walk and not be faint. NIV









Don't underestimate the power of Facebook Groups

Today's society is both blessed and cursed with social media.  I decided to turn social media into a blessing to see if there was a PAO board on Facebook.  Why not? There's boards for everything else.

Joining the PAO facebook board was the best thing I could have done. The group of people on that board are amazing, positive, full of information, all going through different stages of the process, willing to share, and encourage each other. Other than my belief in God, family, and close friends-- they have become my new lifeline. They have been there to answer my questions, provide support, and help work through the many emotions that a person facing such an extreme surgery goes through.

Don't get me wrong, my friends and family are great.  They can provide physical support by doing things I can't do or on the spot emotional support.  But the specific support that I need can only be found by communicating with other people in the same situation.  They get it... sometimes just typing one line and having people respond with same here, or I went through this and this is how I overcome can provide the comfort that you need.

Wednesday, September 3, 2014

The awkward silence of chronic pain

There's no nice way to say it, but when you have been in chronic pain for long periods of time, people around you may become awkward.  The stigma behind someone in chronic pain can be confusing for those around you; especially if they have not experienced it either themselves or with a loved one. People inherently don't like awkward situations.  We naturally shy away from them.  Suddenly you find yourself in pain and as it drags on and then people around you change.  They don't know how to respond. Society views pain as something temporary. So, for those of us that find ourselves out of societies box living in chronic pain, we must accept and have compassion that the majority of people in our society don't know how to respond.  Friendships become awkward, family members might back off, and coworkers might avoid you.  Not everyone is natural at empathy so things become awkward. They don't know what to say or how to act. Try and have sympathy for them as it's an adjustment on their part too.  No one told me this when my journey first started. It is something that I have seen slowly happen over the last six month. I have spent much time reflecting on this and observing people's reactions.  Through prayer, reading the bible, and researching how people respond to those with chronic pain I know have compassion for their awkwardness. I no longer see it as a rejection and understand that they are doing the best with what God has given them and their experiences in life.

Because of this awkward stigma, I have posted an article under my links tab to help family and friends understand what people in chronic pain are going through and how you can support us.



Proverbs 18:24

A man of many companions may come to ruin, but there is a friend who sticks closer than a brother.

Tuesday, September 2, 2014

Empty Handed

I titled blog entry empty handed for a reason.  As you read through my pre-diagnoses journey, you will notice that I stumped many specialist leaving their office empty handed; ie without a diagnosis.

Looking back, symptoms of being dysplasitc started April of 2012. During workouts, I noticed knee pain which is uncharacteristic for me.  For a few months I thought nothing of it and ensured to closely watch my form. Since the pain persisted, I requested that my Primacy Care Manager (PCM) put in a physical therapy consult for me. The physical therapist diagnosed me with a tight IT band causing my muscles to pull on my knee cap. I stayed in Physical Therapy for about 6 months. My course of treatment consisted of dry needle therapy and corresponding workouts to strength the weak areas of my leg. The Physical Therapist noted mild disuse atrophy of the left leg, but ensured me that once the tightness/trigger points were resolve, my muscle strength would come back. I was released from Physical Therapy October 2013.  I still had minor issues with my leg, but nothing near the pain, pulling, clicking sensation that I originally started with. I was satisfied with the amount of activity I was able to go back to and just accepted that as I age, I would have to modify some of my workouts.

Then on October of 2013, I sprained my right ankle 3 weeks after being released from PT for my left leg. Then, on December 9th, I bent down and felt instant pain in my inner groin, hip, and lower back. There was no associated sound; snap, pop, crunch- just PAIN!  I was in tears for the majority of the night.  At the time, I thought I had pulled a groin or abductor muscle.

Back to PT I went in January and once again started dry needle with my left leg to help loosen all the muscles that not only tightened up around my IT Band/Qaud area, but all the muscles in my inner thigh, lower back, and side area for what we thought was a sprained muscle. Although I was seeing some progress 4 months into therapy, I was no where near what I should be after four months.

Back to my PCM I went to have a round of blood tests done.  She ordered blood tests and consult to a hip orthopedic.  While I agree that I had confusing test results that noted CPK levels being high along with edema on the MRI, the first orthopedic I saw should have picked up that I had dysplasia. However, he did not, and I was filtered through additional specialist. I was told that all bones look solid and in-place as they should. I was then sent to a rheumatologist and neurologist to confirm if I had a muscle disease called myositis. Rheumatologist cleared me of no muscle disease through more advance blood testing. The neurologist did confirm muscle damage and ordered a muscle biopsy since for me since a biopsy is the only way to rule out/confirm myositis. Thankfully, the muscle biopsy came back negative, but did note neurogentic atrophy.

Meanwhile, while waiting for the biopsy results to come back, I still had pain, weakness, atrophy, instability, and random movements would flair up the pain even further in my inner groin area. The symptoms improved on some days, but most days were painful.  As I progressed down the chain of specialist, different drugs were prescribed to help manage the pain; the steroid pack working the best. Dry needle was and still is my form of pain management.  I did not want to be on narcotics with small children and a full time job. I needed mental acuity to get through the day. Finally, I settled on a stronger version of Motrin called Lodine and Tramadol paired with additional supplements suggested by a nautropath to help reduce inflammation. I also relied on massage, chiropractic care, and acupuncture to help manage the pain,

The roller coaster of emotions that accompanied me through this part of my journey was a struggle. Working full time, mid-career, trying to make up hours before and after work while managing pain all while trying to be a Mom and Wife exhausted me. Just getting through the workday was a chore for me. Most days I was in tears by the time I got home feeling frustrated with no answers, in pain, and trying to keep my life moving along. I wasn't the Mom I wanted to be nor Wife.  I missed so many sporting events with my kids due to appointments and physical therapy or just the inability to go. The gravity of my situation really weighed heavily on my heart. How can a person in near excellent health go from being on the go and active one day to suddenly in chronic pain, limited movement, with atrophy? It just didn't make sense..... I wasn't satisfied with any of the answers the previous doctors provided, but understood that they were best trying to diagnose me within their area. I wanted a doctor that would assess the whole situation; not just auto-immune, nerve, or bone. I may not have a degree in the medical field, but my background in IT kept me moving.  I knew that there had to be a cause and I wasn't giving up.  I would not let this situation hinder my life. It might set me back on many levels, but I would keep digging. My husband and I kept on adding what it wasn't to our exclusion list while deciding what the next step should me.

As a last resort, I decided to go see a physiatrist. Physiatrists are nerve, muscle, and bone experts who treat illness that affect how you move. I wish I had known that there was such a group of specialty doctors at the beginning of this; as I would have started with them. He ordered a particular MRI requesting a CT guided injected contrast to my hip joint followed up by an MRI in additional to all the previous MRI's that had been done. The difference being, the CT guided direct inject MRI showed that I had a hip labral tear!  Finally- a diagnosis! The day he called to tell me what the MRI results found I about cried with joy at work. I had no clue what a labral tear was or how to fix it, but I FINALLY had a diagnosis.

It was the Physiatrist's diagnosis that led me to seek a 2nd consult with a hip orthopedic and the additional discovery of bilateral dysplaisa.