Life goes on

It’s been 15 months since I’ve updated this blog. Many times in my head I’ve thought about doing it, but then I put it off because either I didn’t have the time when I was thinking about it, or I didn’t want to deal with the emotions that come with revisiting and re-processing my hip issues and years of chronic pain, dysfunction, surgeries, and recoveries. The truth is, when I learned my surgeon dropped my insurance at my last visit in February 2016 I thought that was a sign from God that that door was closed, that chapter of my life was closed and it was time to turn the page and I didn’t want to look back for awhile, but just to move forward and accept what was.

I continued after February doing my own physical therapy for a couple of months at home, but then for the first time in years the exercises I was doing started getting too easy for me, I couldn’t believe it. I emailed my PT in Columbus to ask what to do next, but he never replied so I realized that chapter had closed too, and I nervously headed back to the gym in April 2016, and very very slowly with much trial and error started to add onto my PT exercises. I started on the elliptical, only 3-4 minutes the first day with some light PT exercises, and added a little bit at a time. Oh there were times when I had flares, when I did too much but didn’t realize it until it was too late. They lasted usually a 1-3 days, one time a miserable 3 week flare (where I started to get scared I did long term damage but didn’t thankfully), and some other times they would last a week or so. I came to realize early on that I could only exercise two times a week and had to have at least 2 days in between. When you have a brain that wants to push, but a body that doesn’t let you it can really mess with your head, so I really had to continue to give my desires vs my reality to the Lord over and over again in this area.

During this time, around March of 2016 I was at a family event at church when one of my friends and leader of our prayer ministry team (which I am part of) told me that she thought I was supposed to go on this mission trip to Peru with the team that June and asked me to pray about it. I knew about the trip already, and deep inside really wanted to go, but didn’t see how physically it would be possible. At this point I really wasn’t walking even community distances, much less through whole airports and not to mention whatever we would be doing activity-wise in Peru. I also could not sit for more than a couple of hours at most (and that was with pain), so traveling to South America just didn’t seem realistic. I did go home and pray about it though and talked to my husband (who knew my limitations more than anyone else) and he said it was too risky and not a good idea. A variety of things happened over the next month and my husband and I were at odds with it still one Friday afternoon and I had to give a final decision so the trip tickets could be purchased by that coming Tuesday at the latest. I decided to fast and pray intentionally the next 24 hours (this was something new for me, as I love food and had never fasted, but felt like God was telling me that I should). Saturday I had a lot of alone time and poured out all of my fears about the trip to the Lord and I heard him speak to me and tell me that I was going to be alright if I went, that he would take care of me. I also laid down my agenda and prayed that if I was really supposed to go then God had to change my husband’s mind, because I was not going to fight him on this, and if his mind did not change then I would not go and wasn’t meant to, and I would be ok with that. I felt a peace in my soul after that day. Sunday night my husband approached me and I said that I wanted him to talk first and I would do what he thought was best. He then told me that if I felt that I was supposed to go, that he would support me in that decision. It was a pretty amazing moment, but not half as amazing as what happened in Peru.

So June came and 4 of us went to Lima, Peru. It was 17 hours of travel and 3 flights, needless to say a loooooooong day. I was hurting bad when we got there. The next day we rested and then on Sunday at the house church meeting some of the church leaders prayed over me and my pain decreased some which was a nice break from what I was experiencing after the long trip. A few days later when I was back at my baseline of pain we went to a shanty town and did a prayer walk through the town which is located on a large hill. We walked up/down and all around praying for the ministry the church has started there and for the people of the impoverished town. Right around the 3 hour mark my right hip was done. The muscles in the leg spasmed up, I had burning pain in my right hip, I was limping pretty bad, and my low back was starting to spasm up too. I was informed that we were finished and I limped my way down the mountain just trying to get through until we could catch a ride back to the house we were staying at to rest. We decided to pray at the bottom of the hill before leaving and my friend, our leader, asked one of the missionaries to pray for me. As he was praying for me, he placed his hand on my head and I suddenly felt this strong heat come into my right hip and leg where it was all spasmed. When he ended the prayer and removed his hand from my head the muscles were fully relaxed, all of the horrible pain I had been having was gone–just like that. He asked me to lift my right knee up in the air, something I rarely did because over a 40 degree angle I would get a sharp pinch in my hip. I did it, and for the first time in many years that sharp pinch was gone. I was so in shock I couldn’t even speak. I walked to the taxi, walked and not limped. feeling my normal tolerable level of pain, like we hadn’t just walked 3 hours up and down a mountainside. The next day I expected to be in bad pain, but just my usual pain of instability was there (minus the hip pinch which was still gone and has remained gone up to this day). It was a miracle that I received that day, and I remembered that God had promised me back in April that he would take care of me in Peru and he did. It wasn’t total and complete healing, but it was enough to start to change my life upon return home.

(On our way up the mountain and near the top of the mountain)

On the way back to the airport a few days later I was prayed for again, and somehow after making it back home 17+ hours later and sleeping in my bed, I woke up feeling like my normal pain days, no extra pain despite the long trip with walking through airports and sitting for hours on end. The trip home itself was miserable however for a different reason, mainly because a couple of us appeared to have picked up food poisoning or something like that which hit as we got on the plane. I won’t go into details, but it was not pretty and I felt really bad for the lady sitting next to me.

Upon returning home I got back into my gym routine, but was nervous about another trip coming up in August–a 4 day trip to Disney with my hubby and 2 kids. It was someplace we always wanted to take our kids to before they got too old (they are 8 and 10 now), but with all of my physical problems for so many years it seemed impossible. I was walking more in the community upon return from Peru, and I could now do the grocery shopping, which was exciting because I had to give it up for 3+ years because I could not walk that much. I also could do an hour or a little more in Target without using a motorized cart, walking on my own two feet. I limped a bit at the end, but still I could do it. This gave me some confidence for Disney. We had booked the Disney trip in the spring praying that I could handle it, and it ended up being amazing. I was able to walk through the smaller parks with rest breaks for shows and sitting whenever I could, and in the Magic Kingdom I used a wheelchair. I knew my limits and walking that far was more than my still weak right hip muscles and low back muscles could handle. I got over my pride with using one, and rode it with a smile. If we were in an area for awhile I would park it and walk in that area, but if we were going across the park I would hop in and let Yago push me around. I had to die to my thoughts of “what will people think when they see a young looking non cast/brace wearing person in a wheelchair?” I just had to die.to.it. Not easy, totally supernatural thing from the Lord.

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(A magical night in Disney)

I started to have a life again after the summer. I got busy for the first time in years. I got very involved in a local non profit at various levels helping underprivileged students, as well as with our prayer team and other ministries at church. I no longer panicked when thinking of going places, wondering if I was going to be in too much pain. There are times when I overdo it, but usually a day or two of rest and I’m back to my baseline. I’ve come to realize that with my hypermobility syndrome that I will never be “normal” and pain free unless the Lord intervenes and chooses to fully restore my body. My ligaments which were already messed up from my genetics are even worse after all the compensations, surgeries, scar tissue, etc… and my pelvis and right hip and low back still have instability, and I have constant pain in my neck that results in dizziness and other issues that mimic POTS at times from instability. However I asked God for years to bring me to a place where I could function in a tolerable level of pain to do basic daily tasks, to do some fun things with my kids, and to be able to go to the gym a little bit to work out. He has granted these things to me. I choose to focus on what he HAS done and what he HAS answered vs the residual pain. Many people have prayed over me asking for complete and total healing, and that would be amazing if it happens! But if it doesn’t I am so grateful for how far the Lord has brought me.

Looking back at the time I was living through hell – doctor after doctor, misdiagnosed many times, passed around from one doctor to another because no one knew what to do with me, my pain minimized and made to feel like it was all in my head, the horrible life altering pain 24/7 with no end in sight, a very small support system and on and on. Finally when I was diagnosed years later then came the 5 surgeries, 1 of them failed, 1 of them incomplete, most followed by months and months of various therapies and interventions, a river of tears, years of not smiling (per my husband) and clinging to God each second of the day. As I look back now I see God’ hand all over what I was going through and I do see purpose through all of pain and suffering. You don’t walk through hell for 5 years and come out the other side the same. It changes you for the better or the worse, and I choose in that time to grow closer to the Lord who has healed me in so many ways at so many levels. Although at the time I felt like I was “missing life” and hated it, I am now grateful for all of the time I had laying on the couch, sitting on the steps of my soul with the Lord, feeling the comfort of Jesus when hitting rock bottom, digging into the Bible constantly to find hope because I didn’t feel like I had any left. The Lord showed me so many things over the years about myself, about Him, about others. He gave me compassion, empathy, patience, trust and the list goes on and on. I remember 3 years ago when I finally stopped fighting him and submitted to his will instead of trying to push mine forward. It was like I was exhaling for the first time. Submission has not been a one time thing, but a daily choice to follow God, to say yes to things the Lord asks of me when it’s really hard and uncomfortable, and sometimes to say no to things that others ask of me and I hear God tell me no. My prayer last year into this year has been for God to just show me the next step he wants me to take. If I were to see the whole staircase (like I used to want to) I don’t think I could handle it. Plus it keeps me dependent on the Lord when my control freak self wants to jump back out and take over. Like I said, it’s a battle to submit daily, but I’ve seen the goodness of the Lord and I know that he knows what is best for me.

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So as I’m coming to an end here tonight I have some fun pictures that I’m including at the bottom of special moments for me throughout this past year. Places I’ve enjoyed, family that I love, friends that I care deeply for and am so grateful for, experiences that I’ve had. Last week was May 17th, exactly 4 years after my 2nd surgery which was my first one that was major, my first PAO. I was at an amusement park with my husband and kids that day called Cedar Point. I did again have to use a wheelchair because I cannot do long long distance walking, but I was there and I rode “big kid” rides with my kids and we enjoyed our day together as a family. It was something of a dream I had given up on years ago and it came true, and it came true on the anniversary date of my surgery. I didn’t plan that, in fact I didn’t even think of that until we were halfway through the day in a line and it hit me that it was my “surgiversary.” The last time I was at Cedar Point was right before things went downhill in summer of 2011. I felt like things had come full circle.

(Our fun day in Cedar Point)

I also in the past week decided to open up the surgically sealed bag that held the 4 (out of the 10) screws that were taken out during my last surgery in October 2015. I held them in my hand and immediately tears streamed down my face and I didn’t know why, but now I think it was something I needed to do to “let go,” something that I didn’t even realize that I needed to do it. I could continue to go on and on about ways that I’ve seen God working through this all the last 6 years, but then I would be up all night lol. Thank you for reading my heart and thoughts through the years and for the prayers so many of you have prayed up to heaven for me. I may update this every once in awhile, I’m not sure yet. I do know that tonight I have a heart full of gratitude for the Lord, for who he is, for how he provides, for how much he loves, etc… Lastly, I want to leave you with this saying I heard in a movie years ago that I love, love, love: God is good all the time, and all the time God is good. Remember that, even when it’s hard to see, he is always good and always at work.
God Bless

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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.

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     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.

 

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     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.

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     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.

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     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.

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     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.

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     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.

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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:

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      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.

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     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).

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     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.

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     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.

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     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.

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     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.

11 Weeks post op, staying patient with the slow progress

Tomorrow will be 11 weeks post hip scope/RPAO surgery (if you are not sure what that is, it’s basically a doctor taking a hammer and chisel and breaking your pelvic bones to move the position of your hip socket to correct for hip dysplasia).  Time seems to fly and seems to move slowly at the same time.  When I find myself mentally trying to speed things up, I stop and pray for continued patience and for God to help me to just focus on today.  I look around and see things that I’ve wanted to get done around the house for months and I don’t have the ability to do them yet, so I stop and pray.  I look at my car and think how much I want to drive instead of call and ask people for rides whenever I need to go somewhere (when my husband is working), so I stop and pray. I have days where my pain levels in the soft tissue around my hip and back get so increased that I have to lay and rest and I start to get frustrated that the things I had planned on accomplishing will once again not get done, so I stop and pray.  I do a lot of praying some days as you can tell!  I do see my progress a little each week in how it is easier to move and the pain is not as intense as it used to be long as I continue to modify my life, but the lack of strength/endurance, and pain in the muscles that have been so chronically overworked for so long makes it hard to be positive in long term, so that is why I choose to focus on today.  I have been trying really hard to remove things out of my life that feed into that negative thinking pattern that I struggle with.  One example is that I used to be part of some online hip dysplasia support groups for the past several years, and they have served to help me a lot, and after my surgeries I posted to help others too.  However lately I’m seeing everyone who had surgery at the same time as me or after me doing incredibly awesome, in which I am truly happy for them, but it was really getting me down about my slower recovery so I decided to go take myself out of the groups which was hard, but necessary for my mental health I came to realize.

I started physical therapy in Columbus at OSU Sports Medicine and have had 3 sessions so far.  It’s a long drive (2 hours each way, my dad takes me down and we spend a lot of hours in the car bonding together) but my PT is well worth the drive, as he has rehabbed many people after this not very common surgery, and last week he said something that seems simple to most, but meant a lot to me “you’re starting to fit the pattern of others after this surgery.”  I have NEVER fit the “pattern” when rehabbing after my other 3 hip surgeries so it made me excited to hear him say this!  I am still using 2 crutches when leaving the house, and even part of the days in the house (especially when my glutes get tired by midday).  Other times I use 1 crutch in the house, and sometimes take a few steps here and there without any crutches, but I have a really bad limp still so I try not to do that too much.  My PT said I will probably be on crutches another 4-6 weeks in the community, and that hopefully I will be able to start driving locally in the next couple of weeks.  Little by little we are increasing my exercises.  Other problems have emerged as a result of the weak hip muscles, problems that I have struggled with in the past pre-surgeries and after each of the other 3 hip surgeries, but I am trying really hard to be patient and hope and pray that they will resolve once and for all in the next 6-12 months.  My range of motion is pretty much close to normal and I can do things like get on/off the floor without too much difficulty.  I am back to doing my normal cooking (I just use a chair to sit when my hip muscles fatigue), doing laundry (I fill the basket and kick it to the steps where my husband brings it down to the laundry room and I take over from there), and even have started sweeping here and there a little bit.  I no longer limit myself to only going up and downstairs once a day.  I go up at least 2-3 times a day and into the basement at least once or twice a day.  My exercise bike is in the basement and I am trying to ride it every day as suggested by my PT.  I’m only up to 8 minutes, but this is the most I’ve ever done, because I haven’t even been able to do 2-3 minutes after any of the other hip surgeries without having really bad pain in my right hip and in my SI joint.  It shouldn’t be so surprising to me that I don’t have the same pain anymore since from a structural point my hip joints for the first time in my life are in a good position; however it is amazing to me because after each surgery I hopped on the bike (when given the ok by PT) ready to attack my rehab and get things moving, and each time I was off within minutes in terrible, terrible pain.

It seems I’ll be going to Columbus every 1.5-2 weeks for PT visits, and eventually the time will be spread longer, but probably not until I am off of my crutches completely.  I am rather sick of the crutches at this point, but I want to do things right.  The muscles on the right are way more messed up than the ones on the left were.  Looking back and reflecting I see how the right labrum was probably torn many years ago.  When I used to run and then stretch I would feel pain in the right hip when putting it in end point range of motion.  I used to jokingly tell my husband something was wrong with my right hip and that someday I would probably need it replaced.  I had no idea how bad things really were.  What seemed like a small problem 4 years ago (just a “simple” case of bilateral plantar fasciitis that developed from training for a ½ marathon and didn’t seem to ever get better despite many treatments) actually required 2 years of seeking doctors to get a diagnosis, awful pain that was so bad 24/7 I didn’t want to wake up and deal with it most of the time, followed by another 2 years having 4 hip surgeries (1 which failed).  However as time passes by little by little symptoms are slowly getting reversed as I move forward in recovery.

Looking back over the past 4 years I can’t believe all that has happened.  If I had been able to see ahead Feb. 2nd 2011 (which is right about the time the very first symptoms of plantar fasciitis started) what I was heading into, I don’t think I could have handled it.  The daily pain I lived in, and the inability for doctors to figure it out until early 2013 was too much for me many days.  Even after it was figured out, there was the waiting for the surgeries, which were supposed to be 2 simple scopes scheduled for April 2013 and July 2013, with a “return to life” estimated sometime late fall/early winter 2013.  The morning of my April scope was where I found out I had hip dysplasia, where when I woke up from the surgery found out I would need to have my hip broken with a hammer and chisel in another surgery called a PAO which has a much much much more painful and longer recovery, with the other hip getting fixed having to be put on hold for longer.  The worst pain I’ve ever felt in my life was after the 2nd surgery, the left hip PAO where when I needed to get in/out of bed the pain was so horrendous (despite having an epidural and tons of meds in me) tears would come to my eyes despite me fighting them back.  I hope never ever to feel pain like that again (and I give full credit to The Lord that it didn’t get that bad after this most recent PAO).  Then I developed carpal tunnel as a result of crutches (which I still have to this day). As things improved on that side over the next 3-4 months the other side got so bad I went on crutches again and was told I would not need a PAO on the right, just a scope, as the dysplasia wasn’t bad enough.  That was such great news to my ears! However as the weeks and months went by after that scope I knew something wasn’t right, I had the same amount of pain as I did pre-surgery, it never got better, I was so limited in what I could do and where I could go, and I quickly realized (although no one else believed me) that it was a failed surgery.  Finally, 13 months after that scope I was able to get this surgery (another scope combined with the hammer and chiseled PAO surgery) to finally fix my hip.

The physical and emotional toll this has taken on me was more than I could bear most days.  I knew I wasn’t strong enough to deal with all of it, so I turned to God, His word, His promises, His place of rest.  It was not like I turned to God and all things got better, it was a process through all of this over the past 4 years that has brought me to where I am now.  I look back and see His hand in so many things.  Days where I didn’t think I could handle the pain anymore a verse would pop in my head, a song would come on the radio, a hot bath would temporarily take my pain levels to a tolerable place, etc…  Instead of looking ahead at the future I started just looking at each day as it came, and I looked back at God’s faithfulness.  I noticed that when I made God part of each day and leaned into Him, even if it was only for 10 minutes through quiet time, scripture reading, or prayer I was able to face each day as it came.  Sometime last year, and I can’t even tell you an exact day/month/date but I realized that it was all going to be ok, The Lord gave me peace in my heart and I really realized that I cannot “fix” things on my own or in my own timing, and worrying, stressing, crying, etc… over the things I can’t control was not good for me.  It doesn’t mean I never cry, or that I never get angry or frustrated (because trust me I do!), but I go through those emotions, then open my Bible and journal to read through what God wants me to see/hear/focus on that day.  I’m really not sure what my future looks like now in the sense I’m not sitting down and trying to plan it all out the way I want it to look like I used to, instead I pray for God to use me however He sees fit for His plans.  It’s a scary thought, but also an exciting one.  He continues to break my heart for so many things in this world, and I feel like He’s given me these past 4 years to set me on a better path not just for my own good, but to be used by Him in ways I never would have thought of on my own.  So, I wait patiently (most days anyways) and continue to heal, continue to focus on the things He has set in front of me right now, and continue to put my trust in Him and His promises.  I probably won’t write again until I see Dr. Ellis at the end of the month unless something excitedly happens between now and then.  Thank you for reading as always!

 

Some of my favorite versus on the hard days:

Matthew 11: 28-30- Then Jesus said “come to me, all of you who are weary and carry heavy burdens, and I will give you rest.  Take my yolk upon you.  Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls.  For my yoke is easy to bear, and the burden I give you is light.”

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.”

Jeremiah 29:11 “For I know the plans I have for you,” says The Lord. “They are plans for good and not for disaster, to give you a future and a hope.”