John 15

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

Wednesday, October 28, 2015

Please understand.....

As you see me go throughout my day, please understand that some days I still need my crutches and others I can go longer without them. There are days that I don’t need them and my muscles all play nicely. However, there are also days that my muscles are pissed at each other, not getting along, not working together, and/or just plain refusing to work, throwing a tantrum in true toddler fashion. It’s on these days that I am in the most pain, and I humbly use my crutches to take some weight off my legs so I can enjoy my kids’ sporting events, get to the store, and/or just plain enjoy life.
So, you ask, why do I not get a hip replacement? Well, for starters, Orthopedic Surgeons will not perform a hip replacement until arthritis becomes severe enough to warrant one. The option I was provided with was to live in pain until I reached that point, or have the PAO. Secondly, a person can only have so many hip replacements in their lifetime. Because I am so young, if I chose to have a hip replacement now, this could put me in a grave situation in my 60’s to 70’s when I reach the end of functionality with a hip replacement, causing me to be permanently confined to a wheelchair. I am not interested in that gamble. Thirdly, when you are dysplastic, having a hip replacement does not fix muscular issues caused by the dysplasia. The muscular issues are often as painful, if not more so, than the joint pain itself.
With regards to rehabilitation, please understand that PAO rehabilitation is not even remotely close to a hip or knee replacement rehab. PAO rehab is usually one year, sometimes more. Therefore, when you look at me in bewilderment, wondering why I am still on crutches at 3 months, it’s because my surgeon has not released me to go full weight bearing. I am only allowed to slowly add weight to my leg as my bones fuse back together, and my body is healing at its own pace, try though I may to hurry the process along. 
Also understand that, for me, this condition is bilateral. I am still rehabbing my left leg from my LPAO in November of 2014 and am only 3 months out from my RPAO in July of 2015. Many of my glute, hip, and leg muscles have atrophied away. Pair this with 36 years of incorrect biomechanical movement, underuse of some muscles and overuse of others, my muscular system is a hot mess. Sitting around on pain medicine for the first 4 weeks after surgery is the easiest part of rehab. The struggle becomes real when (a) you’re drug free enough to realize your muscles have turned to jello, (2) each increase in PT results in increased pain and the subsequent roller coaster of emotions, and (3) you realize that you will only survive this journey by staying patient and accepting that you are not in control.
I am pretty sure whatever you are thinking in your mind, I have already thought. Yes, I have gained weight. Yes, it pisses me off and gets me down, especially since I am confined to a playpen of what I can do to control it. In addition to the limited amount of activity I can do, much of the medication I am on also causes me to gain weight, so please don’t give me weight loss advice. Please don’t tell me to just move more and harder. I have moved hard core for 36 years. What I am dealing with on the muscular scale is nowhere near just being out of shape and pushing through the pain. Instead, what I am dealing with are muscles that once locked up make my leg look like it has been squeezed through the tightest sausage casing imaginable. I start to get rapid fire electrical shocks through my leg, my muscles feel like they are being squeezed out, and I have radiating hot burning patches all over. One wrong step, one day, or even hour, of doing too much can set me weeks behind in PT. This I know from my first surgery. My PT had to give me the “come to Jesus” conversation, telling me that if I don’t slow down, and let my body move at its own speed, I may never reach optimal rehabilitation. It’s a sobering realization for someone who loves the rush of adrenaline. 
I have become very good at hiding these symptoms, but if I drift off in conversation or suddenly become silent, just know that I am battling another war in my mind and with my body. Your stories are not boring. I am certainly not ignoring you. Please be patient with me.
I have mourned deeply for what once was and the roles I can no longer fulfill. There is a perpetual sadness, and corresponding guilt, in my heart for my spouse and kids as this has obviously affected them as well. However, I try to remember that wisdom always follows sadness. Growth occurs after a rest. I am not asking for any sympathy. We all go through our own struggles in life and this is mine. I fully expect to rehab to a functional level that enables me to lead a modified lifestyle. I have no desire to run or do Crossfit again. After $250,000 in surgeries, another $10,000 in PT, and additional thousands of dollars in personal expenses, I will always choose a lifestyle that preserves my joints, rather than partaking in activities that will potentially cause them additional harm.
As much of a struggle as this has been, many beautiful things have happened as a result of this journey. I have learned to face and let go of many preconceived notions about life. I have learned to celebrate my victories, no matter how small the gain. I have learned what it is I truly want out of life versus what I once thought I wanted out of life. I have learned that humans are resilient; our brains are pliable and happiness can be found in any situation. I’ve grown more spiritually, and my connection to God is the strongest it has ever been. I have learned to be thankful for more of the smaller things/moments in life instead of the bigger, more glamorous ones.
Therefore, who am I to curse my circumstances when so many beautiful realizations have unfolded from them? I have learned to truly live life in the moment instead of in the past, or pining away for the future. I’ve learned to be thankful for each moment, as they are all gifts from God. I am forever grateful that I have learned these lessons now versus 20 years from now. As I continue through rehab, I have no doubt that there will be many more ups and downs. I will face them as I have learned to, with grace and a spirit of thankfulness. I will continue to strive to reach whatever my new normal will be. I will continue to trust in the Lord and have faith that he will guide me over these hurdles. I will Persevere and Overcome (PAO).

Friday, October 2, 2015

Hip Dysplasia is not an Individual Diagnosis

Seven simple words....  "Hip Dysplasia is not an Individual Diagnosis". The truth behind those words resonates loudly. While being the person consumed with pain, an unknown diagnosis for 2  years, and the physical and emotional turmoil that I endured my family was also affected. To hep increase awareness and support, my husband wrote a lovely narrative for the PAO Project Hip Dysplasia is not an Individual Diagnosis.

My husband has been the silent "Warrior". I can't express how humble and unselfish he has been over the last 2 years. He continues to keep work, the house, kids, activities, and errands together as I take a step back to heal.

Twelve years ago, we started off as an adventurous couple deep sea diving and rock climbing. Since saying "I do", we have moved 8 times, lived in 4 different states, brought 3 amazing young men into this world and continue to plan for more adventures. However, in lieu of my momentary sabbatical, at times he has had to do it all. Having experienced being a part time single parent during one of his many deployments, I empathize with how hard it is. In additional to my husband becoming the default parent, he also had to assume responsibility for my well being especially during the early stages post surgery.

Unfortunately, the emotions that caretakers go through is sadly overlooked. I hope you take a few minutes to read his narrative: Hip Dysplasia is not an Individual Diagnosis

Sunday, August 23, 2015

Narrative for the PAO Project

Jen Lesea-Ames is an entrepreneur who also underwent 2 PAO's for bilateral hip dysplasia. Over the last year, we connect via facebook. Since she was a surgery ahead of me, she was one of my mentors.
Jen created the PAO Project since there there is little information about adult hip dysplasia and the hip preservation surgery, Periacetabular Osteotomy (PAO), especially from a patient’s perspective. In fact, when searching online for “hip dysplasia,” there is more information about canine hip dysplasia vs. human hip dysplasia!
While I have been open through my journey in my diagnosis and the surgeries I have undergone, I have kept my internal struggles private to those closest to me. The struggle of living in chronic pain midlife as a wife, parent, and career woman. The struggle of seeking a diagnosis as each specialist dismissed me, and the struggle to rehabilitate post surgery.
However, as I wrote my narrative, PAO Project Narratives , I realized that I need to share my journey. Living 28 months in chronic pain is real.... not being diagnosed for 2 years is real... the struggle of watching all that you've worked for slip away is real.... and the fact that there are other people out there living this hell is also real. It's time to spread the word about what hip dysplasia is and what the symptoms are in hopes of reducing the diagnosis time and increasing PAO surgery awareness.
Now that I am 4 weeks post op, I am assured that choosing to have bilateral PAO's was the right thing to do. I expect a near full recovery and to be able to resume most things I was able to do prior to the onset of my symptoms. I am incredibly thankful in my faith in God, to all my PAO mentors, my family, and my close friends. I am also thankful to work for a company that has made accommodations for me.
If anything, please take a moment to read what symptoms of hip dysplasia are.Hip Dysplasia Signs and Symptoms

Saturday, July 4, 2015

Bilateral PAO Purgatory

There are some events in life that change you. No matter how you may pick up the pieces, you will never be who you once were. Your outlook on life permanently changes. Looking back, what I thought were some of the hardest moments of my life I now realize were a mere blimp on the "toughen up radar". I hope to look back one day on this journey and also view this as a tiny blimp.

I don't envision my current state of purgatory to be hell with brim stones and fires in a religious aspect, but instead symbolic. My life continues to move, my kids continue to grow, work continues to move along, but some answers to my recovery must wait.  I am levitating in a state of limbo trying to figure out how to live my life as a parent to young kids while managing my symptoms. Some days I fully accept this and have peace and other days I am consumed with anger and great sadness. I can not go back in time and recreate these moments.

The between times between PAO is delicate. My surgeon is giving my LPAO rehab 18 months to heal. I will not know until roughly 18 months post LPAO whether the nerve and muscle damage in my leg is permanent.While I am working to slowly increase strength in my left leg and hip, my right hip is going down hill. My right hip is locking up more frequently, giving out, and feeling like it's going to slide out of place. This in turn puts additional stress on my left leg, which makes the already angry muscles more angry. Keeping the right mindset has been more challenging now than pre surgery or the first 12 weeks post surgery.

Dealing with a bilateral situation takes perseverance. It takes acceptance, but most of all it takes patience. Just a few mornings ago, I casually said to my husband that waiting for the first PAO was blind, idiotic excitement kind of like a first marriage. However, with the 2nd PAO there is more trepidation going into it. I know what to expect, I know what the recovery entails, and I know the emotional roller coaster that goes along with it. I am aware of the potential pain I may be in, I am aware that the muscles in my left leg may go haywire since it is not fully rehabbed yet, I am playing a necessary game of Russian Roulette.

As I write this, I am 2 1/2 weeks from my RPAO and this quote couldn't be more true.

"Do not pray for an easy life, pray for the strength to endure a difficult one" 

Thursday, May 7, 2015

Another "HIP" to moore

Yes, my right hip is wrecked, far more than my left. Dr. Olson has some pretty fancy "mooring" work to do on my right hip. My MRI results came out a few weeks back, but I have needed some time to digest. From the splotches of words in English I was able to understand this:
  • Right hip labral tear
  • cyst
  • glute tendon tear
  • cartridge is stating to wear down from the tears

The question that has been tugging at the back of my mind is will I still be eligible for a PAO. I feel in my heart that I will be, that the joint hasn't completely degraded and given the muscular problems I have been dealing with as an effect from the dysplasia, it's still seems like the right move to perform the surgery, fix the labral tear, and put my tendon back on my arse so it stops sagging :)

My hope and prayer to the Lord can be summed up in this prayer:

"God, Lord Jesus,  please help me 

I desperately need You right now
I'm all wrung out and I've nothing left
Somehow I need You to turn things around
God, can you help me"

As any other PAO patient can attest to, this is a long journey. There are many days I wonder how much longer this will all go on. In my mind, I am the young 30 something girl without limitations, but then screaming kids pull be back into reality. There are days I'm at the end of the my rope wanting this to be gone and other days I'm calm and stable. 

The bottom line is, I will have surgery of some kind. For those that read this, I ask that you pray that my surgeon is willing to move forth with the PAO. This would provide my body with proper alignment reducing stress on the muscular system allowing me to fully rehabilitation. When I try to explain complications caused by dysplasia to people, I explain hips are similar to a bridge. A badly built bridge stresses other structural components. Hips are no different. Because my hips are off, my muscles have become overly stressed. People seems to get that. 

So, in patience I will wait, with one week to go with this verse playing rewind in my  head: 

Philippians 4:6 

Do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God.

Monday, May 4, 2015

Blogging Sojourn

Much has happened during my blogging sojourn. Honestly, I didn't really know what to blog about nor could I tell you what week I am in. I stopped counting after week 19 to stay focused on my recovery. While bone growth is good and hip stability is much improved, my muscles have been stubborn in responding to the "corrected" muscle firing pattern causing them to respond in erratic ways. It's really a hard balance to guess when my muscles might give out causing my leg to lock up.

It's funny how dysplasia effects people. There are a variety of symptoms; however, I have found only 1 or 2 other people that sustained muscle and nerve damage from it. Most people have experienced the muscular pain from dysplasia, but very few reach the point of damage. While my doctors and I are optimistic that the damage is not permanent, it doesn't take away the frustrations from recovery and the mudslide of emotions that accompany it.

For those following my blog, my recovery has been excellent. My situation is atypical regarding muscle recovery. Most individuals experience tightness until their strength comes back and that's about it. They don't have to guess when their muscles will give out.

I am seeing two of the top Physical Therapist in my area. They both have been nothing short of a miracle in helping me slowly move forward. I have learned more than I ever expected to about the hip, pelvic area, muscles, and how they all entwine. If I am to be honest, I never really planned on learning about all of this. From their explanations, I have surmised that while my recovery may be slower and more problematic, they know what they are doing preserve and bring my muscles back on-line (neuromuscular re-education).

If you have not had to deal with pain for an extended period of time, it's hard to explain the mindset you put yourself in to survive. The day revolves around "what can I do to prevent major pain or set backs". When I have a few days without pain, it's pure bliss and my "stay out of pain" mindset slowly fades away. Therefore, when I encounter a flair up, it requires great mental strength to not cycle into the pre-PAO PTSD state.. and yes, I really used the term PTSD. The state of counting steps, figuring out what errands have to be done to survive, cooking or laundry?

There is a purpose to everything in life. This is one of those times that I will have to put my faith in God and trust the path that has been set out for me to walk.

Sunday, March 15, 2015

Week 18 - Saying Positive on the Rehab Ride

After "over-doing" it the last couple of weeks and being forced to slow down until my PT gives me the green light, my boys have been nothing short of amazing. Clearly losing crutches doesn't mean to go from 5,000 steps a day to an average of over 13,000. It's so hard to remember that just because my hip now feels good, that my muscles are still being strengthened and not ready for the "full-speed-me".

My PT has steadily been bumping up weight bearing exercises over the last few weeks since the loss of my crutches. I have tolerated this well. Unfortunately, that Tuesday all my quad muscles, upper hip muscles, side muscles, and glute muscles locked up bringing back the burning myofascial pain, pulling, throbbing sensation. After an emergency phone call to my Dry Needle Therapist and a round of trigger point injections the trigger points are subsiding. 

I definitely had that "freak-out" moment of WTF, but my PT was very encouraging that this is a minor set back and jumped the gun going crutch free. He explained that because my glute muscles had locked up, my quads and other front leg muscles took over causing the downward spiral. For those that have read my blog in it's entirety, remember that dysplastic hips don't trigger proper use of the glute muscles causing other muscles in your leg to pick up the slack. 

I hopped from being inactive to "pre-dysplasia-symptom-me". I was forced to do a lot of vacuuming to control allergies from a dog I ended up being allergic to (he has since gone back), being primary for the kids, activities, work, house- it all ended up being too much at once (I even hired helped for some of those days). 

My newest advice for those coming up the rear when you loose the crutches - test the water, but still be cautious. TAKE BREAKS. Don't assume that no pain means your muscles aren't overworked. They are sneaky. It's very easy to hop back into old activities, but muscles take time to come back online just like bone takes time to heal. 

I can't really stress what a set back like this does to the mind for the majority of us dealing with dysplasia. A flood-gate of raw, buried emotions came flooding through which I am still trying to process.

Fear and uncertainty if I will ever be free of this. 
Frustration from having to be patient for so long and for continuing to have to be patient. 
Anger, pure anger. 

As I mentioned in my Chronic Pain post, the emotions that we go through is similar to the grieving process. However, for those people with Chronic Pain, I am finding that we may cycle through them at any given time as we deal with the effects of dysplasia and subsequent rehab. 

I also think for those of us who had more of a negative impact from dysplasia before diagnosis with regard to muscle and myofascial pain, our journey and rehab might be longer. Not only do we have to train our new muscles to respond, but they have to grow stronger after being weak for so long. 

My advice....
1. Be aware of how much you are doing. Don't try and be a super star... your muscles will win
2. Embrace the small milestones; even after a set-back. Learn how your body responds and trust that it will bounce back once again. 
3. Don't compare your progress to someone else's. We each have our own story and unique complications. We are not text book cases, nor is our rehab. 
4. Don't settle for average PT's... You need skilled people that are able to use multiple techniques and have a strong understand of hips, muscles, and any other condition you might have like hyper-mobility. I have two- they know each other, and although they don't professionally work together, they are both willing to pair treatments to support the best rehab possible for me.
5. Seek out things that keep you positive. Often times we need to remove ourselves from things that can trigger unwanted emotions. I rely heavily on mindfulness, meditation, audio books, volunteer work, and other brain stimulating activities. Most of us were active prior to symptoms setting in. It is hard for us to not be active. But if we keep our mind engaged in other positive areas, it is easier to accept. 
6. Full rehab from PAO surgery can take up to a year. We are still on the Rehab Ride. There are 52 weeks in a year. Percentage wise, this means I am only 34% into my rehab. Kind of a sobering wake up call when you look at recovery this way.