5 years looking back

It’s been awhile coming for this blog post, but I wanted to wait until I saw my surgeon again before updating.  My 3-month follow up surgical appointment was supposed to be early January, but with the holidays I was told by my surgeon to schedule it at the end of January.  I received a call the week the before my appointment and was told my surgeon was going to be out of the office my scheduled day, and they had to reschedule me and didn’t have any openings until the end of February.  I was supposed to go two weeks ago, but with the snow that was predicted that day I was too nervous to drive 2 hours to Columbus, so they rescheduled me to this past Thursday, meaning my 3-month appointment turned into a 5-month appointment.  Early February I received a letter that my surgeon and PT dropped my insurance as of the end of January.  I applied for a continuance of care, but it was denied.  We worked it out for this visit, and I had my x-rays taken locally and burned to a disc so they would be covered by my insurance.  It was all a bit stressful, but I did make it down to Columbus Thursday for the appointment.

The conclusion from my appointment was that I likely still have pain because I most likely popped a stitch or two from my rectus (a quad muscle) muscle that was partially cut during this latest surgery in October when I accidentally broke my precautions 8 days after surgery, and it will take a long time to scar down.  My surgeon said he rarely goes in to fix tears in this area because over time the muscle and surrounding area will build up enough scar tissue and anchor itself down.  He thinks that with more time the pain I have in that area will decrease as things continue to heal and the muscle tendon fully scars down.  He had my PT come and take a look at me and my strength is pretty good in my hip muscles (not so much in my back I suspect though) but I lack muscle endurance.  I personally also think from a neurological perspective that my muscles don’t always remember when they have to “turn on” and work, or remember how to work together, or what sequence they are supposed to fire in order.  It can be very frustrating.  Anyways, my PT gave me a couple of more exercises to do and said in about 8 weeks hopefully I will be able to progress to some single leg type exercises.  I am also supposed to get back into the water and do some PT stuff in there as well.  Both him and my surgeon said that regardless of the lack of insurance through them, they want me to keep in touch via email and if I have continued problems that they will make it work out for me to come see them again.  That gave me such relief, because being that I still have pain daily and many limitations I didn’t want that door to close, and they thankfully left it open for me.  It’s still hard for me to fully believe everything they predict, because so many predictions have been wrong through this journey.  Also, I am in pain most of the day all day and limited so it’s hard to imagine that in a few months I will be walking all over with little to no pain.  So I take it one day at a time and hope and pray that their prediction will be correct this time.

Being that I was thinking this was going to be my last trip to Columbus (and hopefully it will be) I have been reflecting a lot lately on the past 5 years since all of this started.  I decided last week that I was going to do summary flashback of this journey with words and pictures taken along the way just to help me grasp some closure from this final (hopefully) surgical appointment, and also for those that maybe have read a few updates here and there, but don’t know the whole journey I’ve been on both physically and spiritually.

Here it goes:

So this picture below is me 5 years ago at this time of year (pre-hip problems) getting ready for one of my running training sessions for the Cleveland ½ marathon.  We had just moved back to Ohio from New Jersey 7-8 months prior to be close to family, and life was really good all around.  For the first time in our married lives we had family support, we had a new house, good jobs, had started attending a great church, all was good.  I was itching to make a challenge for myself, so it became my 2011 goal to both complete a ½ marathon and to do it in under 2 hours.  I was a runner already, but only a 3-5-mile runner to stay in shape.  During this time in training when I hit the first 9 mile run I started to develop plantar fasciitis, first in my right foot and within a couple of weeks in the left foot too.  I ran through it and saw a podiatrist and did conventional treatment methods, but it never got better.  The podiatrist said it was safe to keep running, so I did.  I was addicted to running and the runners high so the idea of stopping was not something I was interested in hearing or thinking about.

iPhone Pics 022

     I accomplished my goal May 2011 and ran the ½ marathon in 1:51:57, faster than I had hoped!  It was an amazing experience!  Despite my feet killing me, I couldn’t wait to run another ½ marathon, and my hubby and I decided to do the Columbus ½ marathon that fall together and I was so excited.

As we started out training runs in August, I woke up one morning in so much pain in my feet that I could hardly walk.  I went back to the podiatrist who threw meds at me and sent me to PT, where they told me to take a short break from running.  I was devastated, but thought if I could take care of this problem in a matter of weeks, I could be back out running strong in the spring.  I ended up in PT 2.5 months and never felt any better, but they discharged me anyways.  I watched Yago run the ½ in Columbus from the sidelines with tears in my eyes.  It was a hard day for me mentally because not only was I not running, I was in the same amount of pain as when I stopped running 7 weeks before.  In the meantime, the foot pain evolved to where I was having horrible calf pain in my left calf as well.  I was biking indoors at the time and took a break from that because it seemed to make my calf pain worse, and I tried just swimming for exercise.  (Long story short the plantar fasciitis developed from a rotated pelvis as a result of the hip problems, but at this point no one knew this, we only knew it was PF).  I had started reading my Bible for the first time that year, and was hearing God calling me to trust Him with this.  I decided on December 11, 2011 to get baptized.  I decided that day to follow God no matter what the cost because for so long I knew He had been calling me and I had been resisting Him.  I saw what a broken mess I was on the inside and I knew I needed God to heal me yes physically, but even more mentally, emotionally, and spiritually.  It was a beautiful day.

Looking back, I now know it was not a coincidence as to what happened a few weeks after my baptism.  It was early January 2012 and it had snowed a lot, and our kids (who were 3 and 5 at that time) wanted to go sled riding.  I felt instinctively inside that it was not a good idea for me, but I was desperate to do something fun with them because our plans of going to the zoo and an amusement park that past fall were thwarted due to the pain in my feet and inability to walk very far.  As I walked up and down the hill multiple times I started to have not very good pain farther up my legs.

 

iPhone Pics 122

     By nighttime I had horrendous burning pain all through my low back and both legs down to the toes.   I actually had to use crutches the next several days because I could hardly bear weight through my left leg (looking back I feel fairly confident my second, left, hip labrum tore that day and screwed up my pelvis and lower back even more).  Long story short, the next year was filled with the awful, awful pain 24/7, many dr appointments, meds, tests, therapies, ART, braces, devices, etc… No one could figure out what was wrong with me.  I became severely depressed from the horrendous pain and no longer felt like the same person.  I was not active, I was not functioning as a very good mom, wife, worker at my job as a pediatric occupational therapist.  I spent hours nightly crying and trying to use various interventions to release my rock tight muscles from head to toe for 2-3 hours to relieve my pain to the point where I could wake up the next day and get through the day.  I started giving up hope, but my hubby kept insisting I continue to search for answers.  It was during this time that I started really growing so close to the Lord.  I continued to read my Bible daily, and see the promises of God and how he worked all things for good, even when situations seemed impossible.  My faith was really grown and reading the Bible really transformed me.  Even when I was having really really bad days or weeks I still read the Bible, I still listened to worship music even when I didn’t feel like worshipping.  The Lord carried me completely those days, and I saw evidence of Him working in my life and caring for me with small answered prayers many days when I thought I could not take it anymore.

Through a long story I won’t go into, we figured out something was wrong with my hips late fall 2012.  I was misdiagnosed at Cleveland Clinic in November 2012, but didn’t know it at the time.  The surgeon I eventually met with there agreed I had a hip problem, but told me it was FAI with torn labrum and that me being excessively hypermobile didn’t matter when It came to the surgeries I needed.  I didn’t trust him and he didn’t answer all of my questions, something definitely didn’t sit right with me, so at the advice of a PT friend I called down to a surgeon at Ohio State for a second opinion.  I had to wait 2.5 months to see him, but I felt God tell me it would be worth the wait.  Looking back I can see how God orchestrated these days to lead me to the surgeon I eventually found.

End of January 2013 I met with my surgeon the first time.  He spent almost an hour with Yago and I, and he was patient and answered all of my questions.  I knew that I was led to him by the Lord, and I trusted him immensely at the end of that hour.  He was the first person to suggest I possibly had a connective tissue disorder (which explained the excessive hypermobility and many other joint problems and pain I’ve had throughout my adult life), and said that my back pain and nerve pain he felt sure was a result of having FAI and the hip labrums being torn, and me being hypermobile with instability.  It was a bad combo, but he thought he could fix all, or at least most of the problems.  I scheduled surgery with him at his first available spot which was April.  I was so miserable at this point, I was wearing a sacroiliac belt around my waist at hip level to literally hold my hips inside of their sockets, as they were literally falling out all day long and the muscle were in constant guard mode, and nerve pain that went with it was unbearable.  The surgeries were supposed to be arthroscopic and each was to be a 3-6-month recovery.  He agreed to set my other hip up for its scope for July, 3 months after the first one.  I left that day feeling nervous, but happy to have answers and a solution and plan for the awful pain.  I anticipated I would be fine in a year.

I had to get a 3D CAT scan before the surgery to help him see how much of the bony impingement he should remove, but he said I could do it the night before surgery so I wouldn’t have to come down to Columbus for an extra trip.  The night before surgery we went down, had dinner, had the test, and slept in a hotel.  The next morning I arrived at the hospital and said farewell to Yago and got prepped for surgery.  While in pre-op my surgeon came in with very bad news.  Due to me having a tilted pelvis on my x-rays and MRI’s (which we didn’t realize until he saw the 3D scan) he missed the fact that I actually had mild hip dysplasia.  It showed up obviously on the 3D scan and he told me that a scope would fail, but he still wanted to go in and see if I would be a candidate for the much bigger surgery needed to fix dysplasia, and during the scope he would at least fix my torn labrum because it’s easier with a scope.  He said he would proceed with the scope and do what we originally talked about if I wanted him to, but again it would likely fail.  He gave me the choice, and I told him to do what he thought was best in the long run.  When he left I cried and I prayed to the Lord to please guide my surgeon to do what was best for me in the long run.  It was the first time I truly put my trust in God, I felt completely helpless.  When I woke up in post-op the doctor doing a fellowship with my surgeon came in and said they were going to do the bigger surgery (PAO) in a few weeks.  I cried again and the nurses broke rules to bring Yago in to comfort me.  I did thank the Lord though because I sensed that was the best decision.  I was pretty bruised and swollen, but recovered quickly from the scope, and was scheduled for 5 weeks later for the PAO.

Julie iPhone 070

     May 17th, 2013 was the big day.  I was scared.  Actually I was terrified.  My sister had PAO’s and I remember talking to her about how hard it was.  It is essentially the surgeon taking a hammer and chisel (and a saw at times too) and cutting the 3 bones in your pelvis around the hip socket, then rotating the socket, then putting crazy big screws in to hold that bone in place.  6-8 weeks of no weight bearing and 3-4 months on crutches.  An epidural is used to numb the leg for the first 48 hours because the pain is so bad.  I was also on morphine and 2 other narcotics.  The pain when the epidural wore off was the worst pain I can ever imagine.  Hopping with a walker 6 feet across the room made me sweat profusely and almost throw up and pass out.  I woke up one morning and my BP was 78/39 and I thought I was dying.  I received 2 units of blood (1 pre-donated by my brother and 1 pre-donated by myself) and left the hospital after 5 days.

cpm pic

     The recovery was tough.  The hardest part was hopping on a leg that was not fixed yet.  My in-laws lived with us 7 weeks to take care of the kids and house.  I spent the greater part of the first 3 weeks in bed, and finally started leaving the house for short outings (mostly in the wheelchair) with the family around 4 weeks.  I didn’t expect the amount of exhaustion that comes with major surgery and blood loss.  That part was tough for me.  I had a hard time focusing on anything for over a month due to fatigue and pain meds, so I was not able to continue with reading my Bible these days, but I did continue to pray and listen to worship music.

About 3 weeks after surgery I developed carpal tunnel as a result of so much time on crutches having  the 2 surgeries so close together,  I still remember the blog post I wrote then.  My operated leg was in pain and the muscles had no started working yet, the other leg was in pain because I was hopping on it and it was not fixed yet, and both wrists were burning in pain non-stop from carpal tunnel, and all I could think about was “I have to go back and do this all over again on the other side.”  It was a whole new low for me that week.  I researched and bought these fancy Mobileg crutches online later that which and had them rushed to the house, and they did help take the pressure off of my wrists and cut my wrist pain by 75% within a couple of days, and I was so grateful for that.

crutches pic

     Week 7 I went and saw my surgeon and got clearance to start land PT (I was doing water PT already for 3 weeks) and to start bearing weight on my leg.  I spent another 4-5 weeks on crutches and slowly got stronger.  This is the x-ray taken from that visit of my newly reconstructed hip socket.

full view

     It took a good 12-18 months for that side to feel ok.  In the meantime my biggest problem became that the other hip got so bad while rehabbing the operated side, after a month with no crutches I had to go back on them for the right (non-operated hip).  I had to quit PT then because it was causing my right hip and lower back to be incredibly painful.  We met with my surgeon in August and he was very convinced that the right side was very borderline dysplastic (much less than the left was), and that I did not need a PAO, just arthroscopic surgery to shave excess bone and repair the labrum.  It was a much simpler surgery and recovery.  I was scared it would fail, but he sat with Yago and I and went over everything for almost an hour and we left the office feeling ok with the decision.  I spent 7 weeks on crutches leading up to that hip scope in miserable pain.  On October 22nd, 2013 I had the scope.

September 2014 julie iphone 068

 

Within weeks of the scope my pain never lessened.  I started PT and it made me worse instead of better.  I was so miserable and depressed, and was trying so hard to lean on the Lord, but it was really tough these days.  By 3 months I knew something wasn’t right, but no one believed me, everyone said it was too early after surgery to say if it failed or not.  My good friend gave me the following paper and it encouraged me to hold on:

September 2014 julie iphone 249

      I decided to quit PT at this time and tried rehabbing with a personal trainer friend of mine, and I got a little better.  At this time I decided it would be worth it to drive bi-weekly to Columbus (2 hours away) and see my surgeon’s PT who focused on hip patients.  I realized I was not a” typical” patient and needed someone who really knew what they were doing.  I saw him 2.5 months and improved some, but plateaued and never really could go farther in my PT without flaring my hip and low back.  It was around this time (spring 2014) where I realized that perhaps things were not going to work out as I expected them to.  That maybe God had another plan for me, and that this was not a detour in the path of my life, but the main road.  For so long I had kept expecting to get back off the detour and carry on, but that was my plan and not God’s.  I put my faith in Him that things would turn out ok however that looked (and it was likely not going to be the ok I was expecting up to that point).  That’s not to say I never struggled after that, or that I still don’t, because I do.  I’m just saying that I fully put my trust in God and gave up on thinking this was a detour in my life.  I came to peace with things.

At 9 months’ post op my surgeon and PT finally believed me that the scope failed and we put a PAO for the right side on the calendar for late August.  I was relieved and wanted to get it over with ASAP because of the pain I was in.  In early August I found out my surgeon was leaving Ohio State and going into private practice, and that being he was going to be at a new hospital with a new staff who had no experience with this surgery (he is one of the only dr’s in Ohio who can do this surgery) I now had to wait until November to get the PAO.  Another major setback, but I had no choice but to continue to wait.  I so badly wanted to not be in pain anymore (Still waiting and praying for that), but God was definitely growing my patience at this time.  I prayed for patience back in late 2010, and boy did the Lord answer that prayer in a way I never would have anticipated.

001

     I knew what to expect going into the PAO this time, and had a decent leg to hop around on.  Also, at this point my kids were 6 and 8 and both were in school all day which took a tremendous burden off of us.  My in-laws could not come, but my mom had retired that year so she agreed to come over daily the first weeks to take care of me and get the kids ready and off to school daily.  I pre-froze meals and some friends from church cooked meals for us as well which was so helpful.  The surgery was November 18th, 2014.  It was bad again, but not quite as bad as the first time.  I received two units of my own pre-donated blood and spent another 5 days in the hospital.  One of the worst things that happened this hospital stay was that I got dehydrated and my nice big veins shrunk and they couldn’t get an IV in me to hydrate me and give me my second transfusion.  I was poked with various IV needles for 2 hours 7 times before we had success.  During those 7 times they were digging around with the needles.  It was awful.  I still had some issues and had 3 more pokes before leaving the hospital, YUCK!

I started water PT a few weeks later and spent weeks in bed again, but slowly got better.  New Years was at 6 weeks and my sister was here from CA visiting and we enjoyed time together despite me being non-weight bearing on crutches in pain.  I tried to be in good spirits and enjoy the evening.  The following is a picture of my sister, myself, and my mom from that night (my mom does not drink alcohol for the record, we were joking around telling her she had to hold a bottle of rum to be in the picture).

158

     The next week after New Year’s I saw my surgeon and got clearance to start bearing weight and land PT.  We decided given my complicated history having me go to Columbus to see his PT vs. seeing PT here where I live.  My dad drove me at first weekly, then bi-weekly, then tri-weekly, then monthly for several months.  I myself couldn’t even drive locally until 4 months’ post op since it was my right leg and I was having major pain in my hip flexors. The following is the x-ray from that visit.

177

     As time went on I continued to struggle with my hip flexor muscles.  I was getting stronger in hip glute muscles, but had so much pain so easily at the front of my hip.  Everyone kept saying give it more time, but I felt something was wrong.  I went through the spring and summer rehabbing and doing my best despite my limitations.  I could not be on my feet more than 10-20 minutes without bad pain starting in my low back and front of the hip.  I am very hypermobile as mentioned earlier here, I have always had pain in my neck, and on/off in my low back and various joints in my body, but this pain was different.  My hip joint itself felt stable (which it had not before the PAO) but I could not figure out what it was.  That summer of 2015 we visited my hubby’s family in Guatemala (the plane ride and walking through the airport almost did me in!) and we finally went to the zoo, but I had to ride on a scooter.

At the end of summer 2015 I visited my surgeon again with the ongoing problems, and he suggested I get a shot into the area at the front of my hip as a diagnostic tool, as he suspected my hip flexor tendons were rubbing on my Anterior Inferior Iliac Spine (AIIS) which is a bony prominence on the pelvis.  With the left hip he shaved it off during that PAO, but on the right he didn’t foresee a problem so he left it on.  The shot took away all of my pain temporarily and confirmed what he suspected, impingement of the AIIS.             We scheduled surgery for October 1st, 2015 to shave off of my AIIS and remove what screws he was able to remove (because I was worried that maybe they were contributing to my ongoing pain and muscle issues).  When I woke up after surgery he told me that he partially detached and re-attached a muscle to get to the bone he needed to shave off (and then shaved it off), got 4 screws out, got another 5 screw heads out but they broke off and those parts of the screws were still embedded deep in my bones and should never be a problem, and 1 screw he wasn’t able to get to at all without cutting muscles so he left it in there.  So here is the final product.  I guess I am “screwed” for life, lol.  I got to keep the screws that came out and the heads that broke off as a momentum.  They are as big as they look, several the size of a pencil, crazy.

FullSizeRender (1)

     My PT said I shouldn’t need direct PT afterwards, that he and I could email back and forth and I could do my exercises at home.  I’ve had so much PT for my hips, and 1.5 years’ worth by him at that point, that he knew I could do all of the exercises correctly.  I mentioned in the beginning of this post about the breaking of a precaution 8 days post op and the stitches popping, which was scary and frustrating (and still is).  I am trying to stay positive and hope that by taking things slowly with strengthening that maybe that pain will disappear and my pelvis will get more stable, but I don’t know God’s plan for me, and I have to be ok with that.  Giving control to the Lord was both a one-time as well as a daily decision I have had to make.  My life may never be active again, but I will continue to hope and pray it will be.  To hope and pray for no pain is asking for a miracle given the hypermobility problem I have (I have had PT for most of my joints and have had long term pain in several of them even leading up to my hip problems), but through God all things are possible, so I will continue to pray to be pain free as well, BUT I am not going to be angry or upset or bitter if those prayers are not answered while on earth because one day I Will be pain free when I leave this earth, and I look forward to that new body and new life. While I am here on earth though, I am determined to keep my focus on the people and missions God has put in my life and be open to how and where He wants to use me to spread His love and His message and His glory…..because this life, it’s not all about us, it’s not about trying to find things to make ourselves happy by chasing after things that temporarily fill the voids deep inside that we cannot fill on our own.  It’s about God, and finding love and peace in relationship with the Lord, and allowing Him to transform us and use our lives to glorify and serve His purposes.

IMG_2194

     I’m closing out this very long post today with the saying above which I found on social media.  It has really stuck with me since I saw it a couple months ago.  I consider myself blessed in that as I look back now I see that God has shown me a big part of the purpose of the suffering I’ve been through these past years.  I know not all are so lucky as to see His purposes while they are still walking this earth, and I imagine that must be frustrating and discouraging.  Whenever I have felt these feelings in the past, while in the middle of the storm, when I didn’t see the purpose at the time, I turned to God’s word for comfort and to read and re-read His promises.  Several of these verses helped to give me peace during those times:

Romans 8:28 “And we know that God causes everything to work for the good of those who love God and are called according to his purpose for them.”

John 17:33 “I have told you all this so that you may have peace in me.  Here on earth you will have many trials and sorrows.  But take heart, because I have overcome the world.”

Romans 5:3-5 “We can rejoice too when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation.  And this hope will not lead to disappointment.”

2 Corinthians 12:9 “My grace is sufficient for you, for my power is made perfect in weakness.  Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.”

Psalm 119:14 “You are my refuge and my shield; your word is my source of hope.”

If you’ve made it this far and read everything, I feel honored and say thank you for caring and reading.  I hope that something that I’ve learned and shared from these past painful 5 years somehow helps or impacts you in even a small way, and that if you are not in active relationship with Jesus that you know He is there waiting for you and doesn’t want you to wait until you are heading into the storm to accept His invitation (which is what I did), but would love to take the life you have now and make it even better with and though Him.  Thanks again for reading, until next time.

7 Week follow up with surgeon, good news!

Between Christmas and New Years and the kids being home from school I didn’t have much quiet time to update this.  By the time I had time I figured it would be best to wait until I saw my surgeon yesterday to update how things were going.

Yago and I made the trip down to Columbus with me a bundle of nerves.  It was 7 weeks post op and I had started feeling so good (way better at this stage than when I had the first side done) around 5-6 weeks I broke my precautions a couple of times and had some increased pain over the past week and was freaking out about it.  Luckily I didn’t do any damage.  Dr.  Ellis went over my x-rays with us first and said he thought they looked good.  The front and side cuts in the bones were showing nice signs of healing.  The back cut (the “butt bone”) was not as filled in as he would have liked, but that bone is not as important as it’s not a weight bearing bone, so he gave me permission to start adding weight onto my leg (while using my crutches) and to start PT and as I build some strength start weaning off the crutches in the next month or so.  I may need them for longer distances for awhile, but hope to be off them for shorter distances in the next 4 weeks or so.  Last night I had to keep reminding my brain that it was ok to put weight on the leg.  7 weeks of not using that leg and my brain is confused now that it’s ok to start trying.  I have noticed in the past 24 hours that the muscles get tired and tight pretty quickly, so I have to rest when it gets that way so I don’t flare myself up.  Sitting is resting some, but laying is what the muscles need when they fatigue.  He said I didn’t have any restrictions, but just to take it easy as I wean myself back into life activities.  I’ve went way too fast in the past and am determined this time to take things slower as to minimize flares.

I have been able to be pretty independent with all things now, including tying my shoes, and even painting my toe nails (although it was quite uncomfortable, but I was able to do it a few days ago)!  I’ve done some light meal preps (pancakes, eggs, burgers) and cooking, my endurance just is low so I need to rest awhile afterwards.  I can get on/off the floor fairly well, and pick things up off of the floor too.  Basically everything I can do, I just have to give myself lots of seated and some laying rest breaks.

At the appointment Dr. Ellis also moved my hip all around and said for the first time it felt really good.  It didn’t give me pain either or have that muscle guarding I always had pre-scope and post-scope.  I told him I no longer felt like my hip was falling out of the socket with muscle spasms all around it.  The muscles are tight from surgery, scar tissue, and weakness, but not spasming for the first time in years!  It’s truly incredible to me.  Another huge thing is that before this surgery I had to ride in the car on a solid cutting board to give my hip stability and at all times had to sit in a hard, solid seat to minimize the spasming from instability.  I haven’t used the cutting board in the car at all since surgery, and didn’t need it for the 2 hour down and 2 hour trip back from Columbus!  I was sore and tight, but didn’t need it which was so incredible.  I had been using that thing for almost a year and a half.  I took pics of my X-rays and posted them below along with my scar picture which is looking pretty good at this point–much better than the other side at this stage.  I also received a copy of my operative report so I can keep all 4 together in my files.  Dr. Ellis talked about how he no longer puts in the screw that he put in my left hip going up because it has been bothering his patients a lot and causing them problems.  I’m pretty sure that’s what I’ve been feeling in my left hip since that surgery because there’s always a discomfort, not in the joint, but just below and to the side of it.  With all the pain in the right hip the past year and a half and in my low back it took low priority to me, but I’m feeling it more and more lately (maybe because of the cold temps), especially when trying to flex that hip up and extend it down.  I never planned to get my screws out post surgery, but after I recover from this we’ll see.  I was hoping that pain was due to the pelvis and back being a mess and would go away with time, but after hearing him say that I realize it may not go away and may consider getting it out in time.  I go back to get X-rayed again and see him end of February, so I’ll bring it up then if it’s still a bother.  In the meantime I will head back to Columbus Monday to start my PT!  I will go every week or two depending on how often my PT wants to see me.  I decided it’s worth the travel, he’s that good, and my surgeon really trusts and respects him.  I can’t deal with bad PT again!

I must again give many thanks to my parents who have been rock stars in helping with me and the kids these past 2 months and over the break.  Also the awesome friends who kept the meal train up for us through last night.  All of the food was excellent and sooooooooooo much appreciated!!!!  Lastly my husband who is an incredible man that I couldn’t say enough wonderful things about!  So much to be thankful for despite all that I’ve gone through and the continued journey I am on.  I must say I still have a long way to go, I still have a messed up pelvis and my low back is still messed up, the hip muscles have a lot of therapy needed, and I am in pain still because of those issues all of the time, but it’s way better than it was, the intensity of the pain is much less.  I hope and pray my back issues are not long term, that they will resolve eventually.  I think by 1 year post op I’ll know for sure if there’s a serious problem or not.  Dr. Ellis did recommend I see a geneticist and be followed for my probable EDS/hypermobility disorder and said he expects the pelvic/back issues to improve, but said due to the hypermobility I may always struggle some with those areas.  That’s kind of the conclusion I have come to as well. I try not to overthink it or look into the future of what may or may not be, although I do have my moments of freak out.

There was this movie we saw a year or so ago on DVD where when things went bad this man always said “God is good all the time, and all the time God is good.”  That phrase has resonated in my head this past month a lot.  I know I see posts on social media often when something good happens or all is well in someone’s life they write that God is good.  To me God is always good.  Even in the lowest of lows of my pain and depression, when I was angry at God and shouting at him or crying my eyes out so frustrated with the circumstances in my life, I still said God was good.  Either He is good or He is not, and that  should not change based on my moods, feelings in the moment, or circumstances of my life.  Driving in my car last winter in terrible pain I was listening to some worship music about praising God  and remember thinking (not in a sarcastic way but in an almost desperate way) “I’ll praise you when I get through this trial in life” and was convicted immediately by The Lord in that moment with his response “Why aren’t you praising me now?”  It hit me hard and brought tears of shame to my eyes because I knew He was right, I needed to praise God in all circumstances and really truly trust him.  This was not an easy thing for a control freak, perfectionist like myself. Every time since then I started to go back down my road of doubts and negativity I turned on worship music or started reading my Bible or spent time in prayer and praised God for his goodness even though my circumstances were not good.  I would feel my mood life and The Lord take away the fears/doubts/negativity and little by little.  I am a long way from where I want to be, but so much closer to Him than I ever was, and the changes inside of me are not ones I could have made on my own.  The world and everything in it has the potential and most always will disappoint, things/people/events that made me “happy” were all temporary, and I was always chasing the next “thing” that would give me that temporary happiness again.  I was my own worst enemy.  I see life differently,  better, and feel like I was heading down my own path when God intervened and diverged me to His path, which ultimately is a much better path for me.  I have so much love inside now instead of negativity.

Anyways, to wrap things up, I was reading the other day and came across this and it really resonated with me “Much of our irritability comes from our love of perfection, but perfection only exists in God, we need to love God and others, not the visions we have for perfection on earth.”  That’s what I am focusing on, Love, you can’t lose with love.  If you have time, read 1 Corinthians 13 in the Bible, most know if from being recited at weddings (we had it at our own), but I never really READ it until recently.  God bless, thanks for reading

 

Hips of steel!  Newly operated one is on the left side of the screen

Hips of steel! Newly operated one is on the left side of the screen

Better view of the breaks

Better view of the breaks

Scar is looking pretty healed!  Within  a year it should be just a thin white line like the other side is

Scar is looking pretty healed! Within a year it should be just a thin white line like the other side is

Impact of hypermobility syndrome on my hip recovery

I don’t usually post this often since I just posted last week, but I felt I needed to do a post simply on hypermobility/EDS and the havoc it wreaks on the body and things I’ve learned through this journey for two reasons: 1. to inform those that know me more on my condition (what it is, how it affects  my body, and how that I don’t just get “tired” from being up and around, and it’s not just having increased aches and pains) and 2. to share with those that are going through similar issues with their hips who have JHS (joint hypermobility syndrome)/EDS (Ehler Danlos Syndrome) and how it has impacted my recovery and things I have found helpful and hurtful in my recovery.  I am super hypermobile (will post pics of what I mean) and at this point will be shocked if the genetics doctor doesn’t give me that diagnosis when I finally get to see him in July.  In fact I will keel over in surprise if I don’t have a connective tissue disorder, as I have 95% of the symptoms on the diagnostic criteria.  This is why my recovery is not the normal hip surgical recovery, this is why I am struggling so much to get better and have so much pain some days, and this is why I know I will have issues throughout my life going forward.  I am learning to accept this is how my body was made and how I need to treat it and live going forward.  Anyways, on to more specifics:)

I want to just first briefly put what EDS/connective tissue disorder is.  “The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. ……..The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein “glue” of our tissues).”  So simply my genes in my body have faulty programming and do not produce normal collagen (for me particularly in the ligaments).  Ligaments are what hold the bones together and then muscles give added support in normal people.  For me and “my people” my ligaments are weak and have too much mobility, so my muscles are what holds me together.  Well, in my case that was fine until my hip labrums tore (due to dysplasia and femoral-acetabular impingement) then my muscles in my core could no longer function normally, as the muscles around my pelvis and hips were over-working to stabilize my hips , which led to faulty motor patterns developing from the muscles not functioning properly, which led to the whole body freaking out and the hypermobility became so extreme from weakness of the muscles.  Add in a few hip surgeries which weakened me even more which led to complete body failure (at least that’s what it felt like).  Let me give a few examples of what my body has been doing to me on a daily basis all day long:

When laying on my side, let’s just say on my left side for this example, (in bed or on the floor when hanging with the kids) my entire pelvis literally shifted to the right side from the pressure of the left hip/pelvis on the floor.  Being that my pelvis rotated, everything that attached it to started to spasm and when I stood up I could feel the crookedness of it all.  Did it go back to place you wonder?  Well until very recently (like the last week) when I can activate (finally after almost 3 years and 3 surgeries on my hips and going through 3 PT’s before finally getting a person who has some understanding of all this-my ART chiro and his trainer) my core and hip muscles properly I can usually get things back into place.  Before this, I walked around with a twisted pelvis until I saw a manual body practitioner who could straighten me out by releasing the tight muscles around the pelvis (ok I still walk with a crooked pelvis parts of the day, I’m not close to being “fixed” but I consider it success that I can at least self-correct a few times a day).  What happens when your pelvis is twisted and all the muscles around it spasm, the whole body is out of alignment and the pain is excruitiating. Nerves are pulled on creating burning, awful nerve pain, knee, ankle, foot, and neck joints have pressure in them, fasica tightens and it feels like the body is being squeezed to death.  Now an average person looking at me has no idea, you can’t see it so it’s hard to understand.  Pain meds don’t touch it and not a single position is comfortable.  Even laying on my back is tough because the sacrum is so mobile it pushes anteriorly and causes pain.  Basically I need to change positions frequently all day long to minimize the pain.

One me, whichever hip/muscle group around the pelvis is weakest, as those muscles fatigue throughout the day (which for me a couple of examples would be if I run to a store and stay more than 35 minutes, or do too many therapy exercises, or if I tried to use the broom to sweep a couple of rooms in my house–the vaccum, forget it, can’t go there) they get really tight, and the pelvis being so hypermobile gets pulled to that side (which for me it to the right, as that was my most recent hip surgery and the muscles are still pretty weak with poor endurance).  As they pull the pelvis same pains listed above flare up pretty bad.  I forgot to mention that on me the lumbar spine became very hypermobile during the whole years of hip saga as well and has been pulled back and forth depending on which muscles tightened and that caused the lumbar vertebrae to rotate out-of-place and cause excrutiating nerve pain in L4,5, S1,2 pathways as well.  That area is starting to stabilize a bit with my rehab and is rotating to less extremes than before thankfully!!

Sitting is another area that causes difficulty.  The ligaments are so stretched around the hips and sacrum that when I sit (which is a position they naturally have a little stretch) within minutes muscle spasms and/or fasical tightening begins and its very painful.  I limit my sitting to meal times, church, and/or anywhere I have to sit to a minimum.  I lay down in public places with weird looks, but have stopped caring about that.

An upper body example of how the hypermobility affects me is I cannot do anything requiring repetitive motion.  For example when I make mashed potatoes if I try to peel a bunch of potatoes my right shoulder/scapula muscles start to spasm because the shoulder joint is so unstable.  The muscles then pull on my neck vertebrae and they become misaligned exacerbating the pain even more. Lucky for me my hubby jumps in after a few potatoes to help out:)  Peeling potatoes, who would have thought it could wreak havoc on the body, lol.

Anyways, I could go on and on.  People say look at supplements, look into massage, look into acupuncture, look into mind/body healing stuff, etc… but the reality is I was born with faulty genetics and nothing will change the way my body produces bad collagen.  Pain management via ART and myofasical release I do, and now that I am getting a proper rehab I am having episodes of the severe pain less often.  The things I have learned are this:

A solid core is essential with hypermobility syndrome

When my muscles fatigue, I need to lay down like now, not in 5 minutes, not after 1 more activity, I need to lay down this instant on the ground or a couch or I will be in pain for days trying to recover from “pushing through” the fatigue.

Traditional PT did not understand me at all!!

Strength training needs to be very slow (like a snail’s pace), starting from very basic things and stopping for the day at the first signs of fatigue.  No more pushing myself like in the old days.

Impact exercise is no good for me.

High level resistance training is no good for me.  It’s all about building strength slow and especially muscular endurance.

Tightness that I feel always has a function, usually it’s to protect a joint (such as the very tight fasica surrounding the muscles in my left quad and calf that are protecting my left knee that hyperextends) or it also can be due to weakness in that muscle group, or sometimes both.  For example after my hip surgeries my hip flexors were so tight.  I thought it was because they were trying to be dominant, but really they were/are so so so weak.

My hip surgeries recoveries (left scope 4/13, left PAO 5/13, and right scope 10/13) are not like most people’s hip recoveries and I cannot compare myself to those people who are out doing normal activities within a few months after.  What took them 2-3 months will take me 1-2 years if I’m lucky, and even then it seems I will have limitations.

My tempurpedic bed is extremely important and causes me the least amount of pain in laying down.

I need to change positions frequently throughout the daytime.  Not a single position (including laying down) is good for me for any length of time.

 

I have to say I’m still not convinced I don’t have SI joint dysfunction, but only time will tell as I continue to get stronger little by little.  I still live the majority of my days from inside my house, but at least the pain is at a tolerable level more than intolerable if I lay low with activities, whereas before it was just plain miserable regardless.  I’m going to attach some pics here of my hypermobile joints so people can understand what it means. The elbow ones show the hyperextension of my elbow (and in one you can see that I can turn my shoulder to an abnormal angle), the wrist one shows the crazy wrist flexion I have, and the finger ones show my crooked fingers in the one and the hyperextension of the finger joints in the other.  In the finger ones, these are me trying to put my fingers straight, and that’s as “straight” as they can go. Funny, but for years before I “fell apart” I had pain in my hands, neck, and back, but it was functional pain and didn’t stop me from doing the things I wanted to do (if I had been wiser I would have listened to my body then I suppose and avoided some of this misery, but hindsight is always 20/20).  It all seems to click together now those pains paired with the other “odd” stuff my body always had.  I’m attaching a link to an in-depth article on hypermobility syndrome if anyone reading this thinks they may have it and want to learn more.  I hope it helps.  As always, thanks for reading:)

http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

 

photo 1 photo 2 photo 3 photo 4 photo 5