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

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.

Surgery #5 and recovery (2 weeks post op now)

I’ve been thinking about how I should update this blog since I went ahead with the surgery, so here it is…..

Monday, September 28th I went to Columbus with my husband and saw the rehab doctor and had the injection into the area around my hip flexors where I was having ongoing pain.  I had the numbing shot first (just like with both of my hip joint injections in the past) so the actual injection itself didn’t really hurt.  The doctor used ultrasound to guide it, and noted out loud that I had a lot of scar tissue in the area.  When I stood up I did some moves which normally would flare my hip and I had 0% pain, it was crazy.  Now over the course of the next hour as we drove across Columbus to my surgeon’s office and waited there in the waiting room I continued to push it and do more crazy things which did cause some pain to come back, but much less than usual.  We talked with my surgeon and he said given that the shot took All of my pain away, even if it was just 30-60 minutes that was a very positive sign that the surgery would work.  So the plan was to partially detach one of my quad muscles to get to the bone (anterior inferior iliac spine), shave the bone off, re-attach the part of the tendon that was detached, and to take as many screws as he could get out of both sides of my pelvis.  We had a long talk and when we left I felt comfortable with everything.

Fast forward 3 days to October 1st and my parents and myself were on the way back down to Columbus.  I had a 11:50am check in at the hospital so we didn’t have to leave crazy early.  The check in process was smooth. My parents stayed with me up until I was taken back to surgery around 2:40, and this time I only remember being rolled down the OR, although the nurse in post op told me I was chatting it up until they fully knocked me out.  She said I didn’t say anything embarrassing though thankfully!  I think the surgery took 2 hours and I woke up in post op around 5:30pm with not too bad pain, no nausea this time, but a bad sore throat. The bone work on the right went well, and he got 4 full screws out, 5 screw heads (they broke off and he said that I’ll never feel what’s left of the screws because they are so deep in my bones), and there was 1 screw where it was so far in the bone he couldn’t even see the head, so he left it.  Overall everything went well.  I got into a room around 7pm. I had my usual low blood pressure, and the pain was there, but not as bad as I was expecting. The night was uneventful and I left the next morning around 10:30am.

I really don’t remember the ride home, or much of the first few days.  I had 15 stitches and he had opened up about 2 inches of my PAO scars on each side, but used glue to close them.  The only precaution I had was to not actively use my right quad muscle  outside of normal walking for 6 weeks to let the tendon re-adhere where he took part of it off and re-attached it.  Well clearly he did too good of a job, because I was feeling pretty good and walking with hardly a limp around the house without crutches for a couple days (with no pain meds) on Friday night the 8th when company was here I dropped something and went into a deep squat to pick it up and then realized it was a bad position, then pushed all my weight through my right leg (totally breaking the precaution) and felt a stretch, snap, followed by lots of pain and the inability to put weight through my leg without a horrendous limp.  I was freaked out.  Long story short, I iced and rested, started using crutches, emailed my PT back and forth through the weekend, and then Monday called my surgeon’s PA and she said since the pain was getting better (slowly but was still there) keep doing what I was doing and call back Wednesday if I didn’t continue to improve.  I did improve a little each day, so I never called back.  I am now walking a lot in the house with only a little limp and soreness/pain.  I think i sprained or strained the muscle, but I don’t think I ripped the part he re-attached thankfully (that was my fear)!.

Emotionally the first 10 days were like a roller coaster ride.  Part of it I think was getting the anesthesia out of the system, part of it was getting off the pain meds and chemically what that does to the brain, and part of it was me making that stupid move and freaking myself out followed by a breakdown that I had convinced myself I screwed up my surgery and would have to go back in to fix it.  My mental health has improved these past few days (despite the set back of getting the stomach flu 12 days post op, which was awful).  I’ve really been leaning into God and trying to trust Him with this, as well as some other things (non-orthopedic related) that have caused a lot of anxiety in me these last weeks.  Mentally trying to deal with the normal everyday problems of life on top of all of this can be crushing at times.  I find that if I don’t have time to read the Bible during the day, when bedtime comes, I cannot sleep until I read at least a chapter.  My body and mind know that I need to be refreshed and filled up in the Word of God daily regardless of how tired I am in order to remind myself of who God is and that He is in control even when it doesn’t feel like it.

Because I was up and around easier after this surgery than the other 4 (which were much more involved) I didn’t need any assistance other than my parents for driving me to appointments.  That left me in a lonelier place than usual after this surgery, because all day, every day I was alone.  I’ve spent a lot of time alone these past years, which is the complete opposite of the majority of my life.  I’ve come to appreciate it most of the time because it does draw me closer to the Lord and gives me time to think, pray, meditate, etc… but there’s also this part that feels like everyone is too busy with life.  I regret looking back at the times when I’ve been healthy and well and “busy” and have likely overlooked friends/acquaintances who maybe could have used someone to stop by for an hour when going through a difficult time.  I’m praying that the Lord keeps me sensitive to this in others as I continue to improve these next months, so that I can be more intentional in the lives of those around me.

God has been working a lot in me.  The other day I was in the shower and just replaying events over the past 4.5 years in my mind and I just became overwhelmed.  It’s so hard to describe the feelings I had.  I saw all the bad (the hopelessness of 1.5 years in horrible pain with no diagnosis, then the incorrect diagnosis, the 4 other surgeries and recoveries, the hours of tears, the frustrations of months and months of PT which often made me worse, a total of 11 months on crutches over 2.5 years, a total of 7 months of no driving over 2.5 years, all of the medical professionals who gave up on me, the loss of relationships from friends who didn’t understand, lack of compassion and understanding from others who don’t understand chronic pain, and on and on and on…), but at the same time I also saw the good (my surgeon who is the one medical professional who has never given up on me and cares not just about the physical part of things but also about my mental health through these years, my wonderful husband who has given up so much selflessly and how even through the dark, stormy waters our marriage how grown better and closer as we both grew closer to rely on God, the friends from church who provided us with food after several of the surgeries when I was practically bed bound for weeks, our parents who both gave sacrificially through the big surgeries, and most importantly the relationship/trust/faith in God that has developed and grown inside of me through these years and the things that have come/and will come from this as I try and listen and discern the next steps of his will for me).  I was like a crying sadness mess followed by crying happy mess followed by more crying sadness followed by crying and praising God mess.  It was a moment unlike any other I’ve ever had.  I used to say I can’t wait until this part of my life is over and I’m better.  Well I’m not sure what that better will look like, probably not how it looked before this hip journey, but I’ve felt inside for awhile now God telling me that it will be ok (however that looks).  Now as much as I want to continue to rush recovery and get “better” and move on, I am praying for continued patience and trying to relay on his perfect timing because God has worked on and taught me so much through the storms, that if I had gotten “better” I would have missed so much.  Thank you for reading, I’ll update after my 6 week check up in November.

Psalm 37:7 “Be still in the presence of the Lord; and wait patiently for him to act….”

Moving forward with surgery…………..again (sigh)

Well the appointment with my surgeon did not go exactly as planned.  It turns out the hard bump I’m feeling pain at which I thought was a screw, is actually a bony part of my pelvis (my relocated AIIS bone that was moved during the last PAO for those with medical knowledge).  With the left PAO surgery he shaved off that bone, but on the right side he did not shave it off because during surgery when he checked my range of motion it did not affect it, so he left it alone.  As I healed and scar tissue lay down, it now causes my tendons and muscles on/around that area to become inflammated every time I activate my hip flexors.  The higher I move my hip into flexion the worse the rubbing/pain, but even everyday normal walking affects it.  I will be having a diagnostic injection into this area on Sept 28th in Columbus which if it numbs the area and makes most of the pain go away then it will confirm my surgeon’s thoughts on this, and I will go back under the knife Oct 1st to have the bone shaved off (if for some reason it doesn’t take the pain away, we have to make a new plan to figure out why I am still in pain all of the time in that area).  To get to it he has to partially detach one of my quad muscle tendons and reattach it afterwards.  I chose also to get a couple of screws out that are bothersome since I am going under anyways.  I don’t want to get all 10 out because it will involve a lot more cutting, so hopefully the remaining 8 will never bother me in the future.  Given my longer than normal history of recoveries from hip surgeries it’s really up in the air how long I’ll be on crutches this time.  He said maybe around a month.  He is not going into the joint which is good, but detaching/reattaching part of a muscle I think will inhibit a quick recovery.  I had it fully detached and reattached on the left during my left PAO and it shut down that muscle bad and took a very long time to come back, and will never be normal again (although it is functional), but this right one will only be partially attached so I’m hoping for a better outcome.
When I left the office last Monday I wasn’t sure if I wanted to laugh or cry.  I didn’t even want to really talk about it with Yago at first.  I just wanted to get in the car and blast praise and worship songs for the first part of the 2 hour drive home.  I can’t even tell you why, except I’m guessing I just wanted to block out reality and focus on The Lord. I’ve since allowed myself to process this, especially after talking with my PT this past Tuesday.  Unless the injection does little for the pain, this surgery is necessary.  The pain I’m still having makes it clear something is not right in that area 9 months into recovery, and it is so specific to this area with the bump. My PT said once the inflammation starts it will shut down the muscle for protection, which then causes all of the muscles in that area to act all wonky, which is why I have likely not gained full pelvic stability on the right side.  So we are now at surgery #5, in 2.5 years, 3rd surgery on this right side in less than 2 years.  Scar tissue is never the same, and each time I get opened up and operated on (however necessary it is) more scar tissue is born, and so I am that much farther from my hopes of regaining a future active lifestyle. I get frustrated by it all sometimes, but I know so much is out of my control so I need to let it go.

I often wonder if most people I know are as sick of hearing about my hip issues as I am with dealing with them.  People ask, but I think most of the time out of cordiality, but not necessarily really wanting to know.  I can tell because if I answer in more than a few words eyes glaze over quickly, or sometimes unintentionally someone will say something insensitive.  I get it now though, people who haven’t experienced the physical and emotional toll from chronic pain don’t understand.  I used to get so upset about that; however it does not bother me like it used to because God has helped me come to accept it.  I am quick now to give grace to people and not try to make them understand or dwell on the fact that they don’t try to understand.  It still hurts a little, but hey, I’m human.  I know that God is writing my story and using my pain (all of the physical/emotional/psychological parts of it) as a big part of it.  It’s a constant reminder daily for me to say to Him “not my will, but yours.”  John 15:4 says “Remain in me, and I will remain in you.  For a branch cannot produce fruit if it is severed from the vine, and you cannot be fruitful unless you remain in me.”  I want to bear fruit for Him and stay connected to the vine.  In the past when things were great in my life it was harder for me to remain in The Lord, because the desperate neediness wasn’t there like it is in times of hardship.  The worries of ever day life were there, but those were not big enough for me to recognize the daily relationship I needed with God.  So this past year I have chosen to look at it this way, that He loves me so much that He wants me to remain in Him daily first and foremost over anything else, and this is the tool to do it until I am strong enough on my own to remain in Him without this hardship that keeps me clinging to Him.

Thanks for reading as always, I’ll update after the injection if I have time, and if not then after surgery I will for sure.  I’ll happily accept any prayers in all this over the next month.  Thanks!

Surviving the summer and deciding whether to have screws removed

It’s been so long since I’ve written in my blog I can’t even remember the last time.  I know it was before school got out in May because once that happened things got crazy here.  The good news is I survived the summer and the trip to Guatemala!! Pre-trip I was hurting pretty bad even with minimal activity.  The travel as expected was hard and it took several days to recover, but by the end of the 3 weeks in Guate I was able to walk about ½ hour with pain, but it was tolerable pain.  That was a first in a long time.  We had a lovely time with my hubby’s family, with my sister joining us the last 2 weeks of the trip.  The trip home I was alone with the kids (Yago had flown the week before for work), and it was hard because I had to carry my carry on over my shoulder (which was heavy and affected my walk and I didn’t think about that pre-trip when I was packing) and manage the suitcases off the conveyer and through customs in Houston.  The trip went as perfectly as it could, my body just wasn’t up to all the walking and sitting and carrying. I stuck to my exercises and could feel my muscles getting a little stronger through the trip and after, but I was also having an increase in pain at the front of my hip.  Not in the joint, but more superficial.  It feels like a screw head jabbing my muscle.  I get it the worst when I activate my hip flexors (like when putting on pants, going upstairs), but I also feel it anytime my hip flexors are tight and working hard to stabilize my pelvis (which is a lot of the time) as well as when I am sitting.  It’s very frustrating to say the least.

I went to Columbus last week to see my PT and he said I am testing strong in all the muscles, except the hip flexors, which I am stronger in them than I was in June (my leg used to fall pretty quickly without resistance when he put me in the testing position, where now I can hold it against gravity and a little bit of resistance) but still weak.  He was very pleased with my progress this summer.  I can walk up to an hour most days with my Brooks tennis shoes on with a tolerable pain level before it gets bad and I start to limp.  Looking back to 3 months ago and 6 weeks ago I went from only being able to walk 10 min to 30 min and now up to 60 min (most days, I do have off days sometimes) with tolerable pain and not a bad limp.  I do see the progress when I look at things this way, it’s just super slow progress.  My PT had me stop any exercises a few weeks ago (we communicate by email in between visits) that really activate my hip flexors due to the new pain in the one area.  I told him I thought it was a screw head, because when I look at my x-ray there is a screw head there, and it told him all the things I mentioned above.  He didn’t want to make guesses, but told me to write everything down and tell Dr Ellis when I see him on the 24th.  He said if that is the case, if I get the screws out I should make even better progress.  He added a couple of core exercises that I wasn’t ready for until now.  That is a good sign, as before he told me he didn’t want me doing any core exercises until my glutes were getting strong, so now I am slowly getting there, yeah!

So now it’s a matter of continuing to very slowly increase my activity levels as I continue with my glute and start my core exercises.  I still limit how much/how many days I can be more active.  I’m learning when it’s ok to push myself a little, and when I need to stop and rest before it’s too late.  My big prayer that I’m circling these days around my orthopedic issues is for God to show me if getting the screws out this fall is the right decision or not.  I never planned to have them out going into the surgeries (my surgeon doesn’t remove them unless they are bothersome, so I was hoping they were not going to be), but now with the pain/issues 2 of them are causing I don’t see how I can ever function semi-normal with them when just walking up the stairs feels like someone is poking a screwdriver in the front of my hip.  Typically my surgeon has people wait a year to get them out, but he will consider it after 6 months if the bones have fused together well (which mine have).  I don’t want to have surgery close to the holidays again, so ideally I would want it in October, but I am worried because getting a little bit of strength has taken me so long that I don’t want to go backwards too far and be in miserable pain for weeks or months again.  If I wait until January or anytime in 2016 we have to start all over again with the deductible.  Money shouldn’t drive surgery I know, but looking at the numbers it will be a hard hit if I wait until 2016.   My PT said because the surgery doesn’t involve going into the joint (like my scopes did) or breaking the bones (like my PAO’s did), it’s literally just pulling screws out, that the recovery is quick and much easier.  He thinks I am strong enough and that it’s a good idea because of the pain the screw is causing.  However, I know more cutting means more scar tissue and my muscles getting confused and weak for a while again.  It will involve pulling muscles and fascia and things aside to get to the screws, and as deep as they go into my pelvic bones, I can’t imagine they will be easy to remove.  It all freaks me out, not to mention the risks associated anytime you go all the way under in surgery. Theoretically it should be an “easy” surgery and recovery according to my surgeon and PA, but nothing has been easy for me.  I am usually the normal recover time doubled or tripled to recover.

Anyways, I would happily accept any prayers you have as for wisdom with this decision.  I go Monday and need to figure it out by the time I leave his office that afternoon. I keep praying daily for wisdom from God as to what to do about this.  I’m really trying to put it in his hands and not let fear and anxiety take over.  I so badly would love this 4.5 year journey of chronic pain and hip surgeries to be over, but it’s not time yet I guess.  Two of the versus in the bible that speak to me over and over these past couple of years that I’m clinging to lately about this are the following:

Romans 5:3-4 says “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.”

James 1:3 says “For you know that when your faith is tested, your endurance has a chance to grow.”

Well my choices have been to throw in the towel or trust in God and have patient endurance.  Not easy when battling awful pain daily that limits life year after year, but I must say through it all I have seen God answer so many prayers through this, and although sometimes the answers were not the ones I wanted, He has answered them and been faithful in being by my side through it all.  My faith and trust in Him has grown tremendously as a result, and I daily remain dependent on Him (which is a pretty good thing I know).  Thanks for any prayers for this upcoming appointment, I’ll update sometime after next week.

5 months post RPAO/scope

I have been meaning to blog for a while now and never got around to it, and I realize it’s been 2 months since I have posted.  I would love to post that things are awesome, but the reality is they are not, but they are slowly (like a snail pace slowly) getting better, so I am trying to stay positive.  I constantly have to ask myself “am I better than before this last surgery” -Yes, “am I better than I was 3 months ago” -Yes, “am I better than I was 3 weeks ago”-I guess so most days, “am I better than last week”-hmmmm that one depends on the day.  If you asked me the past 2 days I would have said definitely, I even went as far to say I turned “the corner” a couple days ago; however today I would say the corner is still in front of me and I’m not really better than last week.  This journey is definitely not a straight line forward for me, it’s constantly one step forward followed by 3 back.  A year ago I gave up my control to the Lord on this whole getting out of chronic pain thing, but I realized as the days went by I can’t just give it to Him once and life moves on all pretty and nice, but I need to give it up to Him every.single.day.  At least almost every single day.  Summer is rapidly approaching and my excitement and hopes of being able to do more with my kids this year is slowly fading as the reality is I can only take a certain number of steps each day (which doesn’t feel like very many, especially compared to my life 4 years ago) and do only a certain amount of activity before I am forced to either stop or flare myself up.  I will say my flares lately have only last 1-2 days at most which I am extremely grateful for.  I know when to stop and I just have to even though my mind is screaming at me to suck it up and push through the pain.

I am getting stronger, I can feel that.  I’ve seen my PT in Columbus 2 times since my last post.  The most recent time was last Monday.  He has progressed me to doing some exercises in single leg standing which means we are getting pretty advanced.  When I walk my pelvis on the right side only drops a little now, but I can’t walk around the block or more than in/out of buildings to get where I need to go because I lack endurance in my muscles even though they are getting stronger.  I’ve been hoping to give up my cane for good, but I’m not just there yet (although most of the time I just choose to not be on my feet longer distances so I don’t’ have to use it).  I have 9 exercises that I am supposed to do daily 3 sets each; however I have only been able to do 2 sets each so far.  I did the 2 sets of all of them the past 2 days and barely rested which was why I was so positive, but it all caught up with me last night when my hip muscles and low back muscles became crazy tight and painful, my fascia was pulling painfully down the sides of my legs to try and stabilize my pelvis (since my muscles were too tired to do it), and my neck was killing me.  If you wonder what the neck has to do with it when my pelvis is off balance from the hip all of my back muscles work incorrectly to stabilize my pelvis and things pull in different directions and fascia tightens and literally my neck vertebrae get pulled out of spinal alignment (I’ve always had this to some extent because I have cervical instability from EDS/hypermobility syndrome but it happens much more often and worse since the hip stuff).  Symptoms I have with this are severe neck pain, dizziness (especially when changing positions), loud ringing in my ears, sometimes nausea, sometimes my vision is off, and sometimes autonomic nervous system stuff like my heart will  start racing or my blood pressure will drop.  There’s a few other things that happen too some of the time.  These things definitely get worse the more “off” my pelvis is.  I’m trying to take it easy and rest today as much as I can.  Sometimes sleep, Epson salt baths, and self myofascial release tools help alieve the hip, back, and neck stuff, and sometimes it doesn’t.  Sometimes it takes several days of rest, other times I have to wait 1-2 weeks until my next myofascial appointment to get relief.

I go back at the end of the May to see Dr. Ellis and get a last set of x-rays and discuss if I want my screws removed.  I’m not sure I will be ready to make that decision at that time.  I want to be strong with decent muscle endurance before getting cut open again.  I’m pretty sure screws are what is poking me in certain spots but I don’t know for sure.  I’m not even sure I care these days.  If I ever get to the point where I am living life with a somewhat normal activity level and no pain in the hip areas except for the screws I will concern myself with it then.  Unless however the screws are what are contributing to my muscular issues that I am having, in which case it would be good to get them out this year.  I’ll see my PT a couple more times in May and get his opinion on this too.  He’s hoping to guide me via distance through email after these next sessions, we’ll see what happens though.

I have a lot of fears right now and I’m trying to give them up to God and trust in His plan still for this, because I know He’s “got this” but it’s still hard some days.  I miss being a productive member of society; I miss working with and helping people as an OT.  My degree and field is so specific that I’m not sure what else I can outside of it.  As of now returning to that career won’t work with my limited physical activity level.  I’ve been praying a lot as to where I am being called (and am physically able) to do for work and/or volunteer my time, where God wants me to be and not just where I myself want to go.  I am investigating into more things, but God isn’t speaking to me about any of them yet, so I feel like He is saying I need to wait patiently a bit longer.  We are also taking a trip to Guatemala to visit our family there this summer for several weeks, and my anxiety (like I had last year before we went then) is starting to come back, the long walks through the airport, the long hours on the planes, all of the activities planned there with family, will my body be able to handle this without putting me in excruciating pain?  The Lord provided me a great trip with minimal pain amazingly.  I keep praying on this, that He will work the same miracle as He did last summer in Guate, that I will be able to handle it with minimal pain and to not flare too badly while away from my myofascial PT (who is the only one who can calm things when I flare too badly).

One last thing I would like to talk about is the amount of guilt that goes along with being a mom in chronic pain.  I’ve met a couple of people, who although their chronic pain circumstances are different, they still struggle with the same mental and emotional issues that go along with trying to deal with what has been dealt to them while being an “active” and “present (physically, mentally, and emotionally present)” mom to our kids.  Our minds are so distracted at trying to keep the pain signals at bay that it’s hard to be fully present with our kids.  It’s hard enough not to be able to physically do active things with our kids that “normal” mom’s do, but it’s also mentally a lot of work to keep focused and present with them during non-physical quality time.  For me, focusing on a game we are playing, a book we are reading, conversations we have ( and if you have elementary aged kids you know these conversations sometimes circle around at times without much point anyways which could leave even a “normal” person confused and having trouble keeping up with it), etc…  take so much effort that I often find myself reading a book to them but having no idea what we read or listening to a story they are telling me but having no idea afterwards what it was even about.  Even when I try to stay focused my pain starts screaming to move positions then to do it again seconds later then again seconds later, then to rub this area which hurts, or see if I can crack this joint so that it gets back into the right position, etc… At night I think about the times I was with my kids physically throughout the day, but not mentally or emotionally and feel guilty, and then try really hard the next day to not fall into that cycle, but it’s hard to block the signals.  It’s not like you can put pain aside like you can a list of things you need to do the next day, the body continuously sends these signals non-stop so it is work to push them out of our conscious brain.  Besides the physical toll, the mental toll is sometimes just as hard if not harder.   If you are thinking what about pain meds, they do little (in my case) for my body so I don’t’ take them, but they too cloud your brain and keep you from being fully present so it doesn’t stop the problem.

I just felt like I needed to write about this topic of being a mom while in chronic pain today because I know there are lots and lots of mom’s struggling with this and I want them to know they are not alone.  I struggled with this so much, and I still do some days, but I know that God knows this guilt and my faults and failures each day, and He also knows what I (we) are all going through/have gone through on our chronic pain journeys and He gives us SO much grace every single day that we ask Him, and we need to allow ourselves to give ourselves grace as well for when we fail, which will happen daily.  It’s ok that we are not who we want to be, that we can’t do what we want to do.  God will still love us, our kids still love us, and we need to work on asking God to help us love ourselves because there is purpose and meaning in our lives and why we are going through many years/a life of chronic pain.  God Bless, thank you for reading.

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.

Pushing forward, but slowly

So I thought I’d write an update today on how  my visit with the OSU PT went last week and what’s been going on since then.  I went last Monday with my dad down to Columbus to check in with one of my surgeon’s hip team PT’s.  I’ll be 3 months post op this week from the most recent hip surgery (right hip scope to fix the torn labrum and shave CAM bump, small pincer, and ASIS impingement-basically shaved off a bunch of excess bone on the hip and socket and stitched the hip that was falling out of the socket back up into it).  Obviously if you’ve ready any of my posts I am not the “typical” hip surgery patient.  I’m chronic and my issues started small 3 years ago but due to many factors that I’m not in the mood to lull over tonight, grew into such a large problems that practically have left me housebound with 24/7 pain despite 3 hip surgeries that have fixed the structural problems (the first step that needed to be taken on this chronic pain journey).

The OSU PT and I talked for 50 minutes, she answered what questions she could (which were most of my questions) and was honest about not knowing the specifics of some of my pain symptoms.  We agreed that my body recruits the wrong muscles to do the work and instead of working together everything works against itself.  I’ve adopted “maladaptive strategies” of movement even with basic things like walking, reaching down to pick something off the floor, reach up to get something out of a cabinet, etc…  I even sit wrong (if you didn’t know that’s possible, yet it is!).  It’s so frustrating because I started realizing this over the past several weeks, so my strategy had become to move less because then I would hurt less.  I knew this was wrong, but became so overwhelmed by the pain and the enormity of the problem that I just continued to make my world smaller and smaller to decrease the amount of burning pain throughout my body.  My body felt like it was fighting itself and was being pulled apart in every direction.  I was contemplating going to a pain management doctor, but deep inside know that the drugs they would throw at me won’t fix me, they will only mask the symptoms of what’s happening, leading me to continue to reinforce faulty movement patterns and making me worse over time.  The PT reinforced that I need to go slow with strengthening, but incorporate correct movement patterns into my local PT to start correcting the way I move in functional, everyday movements.  She said also that I need to stop focusing on all of the specific pains I feel in different muscle groups and look at the big picture, that as I work to normalize my movement patterns to recruit the correct muscles then the pains will slowly start to lessen and eventually disappear.  She also said that I shouldn’t “push through” the pain, but that I needed to force myself to be more active daily, even if it’s just trying to carry a laundry basket or unloading the dishwasher.  Basically if a movement involved bending or carrying something more than a pot of water when cooking or a gallon of milk, I’ve avoided it because something would get stressed in my upper back which would lead to a lower back spasm which would lead to my pelvis going out of whack which would lead to nerve or fasical pain down the leg(s) and so on and so on, or the pain would start in pelvis and move down through legs up then up to back, etc…  She said I need to think about posture, recruitment of the larger muscle groups in my core, and do the movement slowly and cognitively.  I’ve tried this with several things and it hasn’t been too bad, as long as I don’t repetitively make the movement over and over many times because my muscles fatigue quickly, as I have some muscles strength but no muscle endurance.  She also said to minimize the amount of releasing of the muscles I was doing because in the long term that wasn’t what was going to make me better.  I agreed to stop myofasical therapy for a few weeks (as it wasn’t giving me relief the last several sessions anyway) but said I was keeping my chiro for ART weekly, but would try to minimize the things he released (based on my pain at the end of the week when I see him each week).

So I started back with my local PT last Wednesday (the two PT’s had talked before then about the plan and agreed on everything) and we started incorporating some basic movement patterns into PT.  We didn’t know how hard or light to push since we were doing several new things.  I felt pretty good when I left; however within 24 hours all the muscles in and around my pelvis tightened up and shut down and the horrible burning pain came and I was miserable. I was limping by late Thursday afternoon and doubting the plan and completely miserable.  When I physically get like that mentally I am tore up inside.  Friday morning I saw my chiro and said to just release the really bad things because I was trying to stick to the OSU PT’s plan, so we released a little back, hip flexors (which were nightmarishly painful) and right hip rotators/glutes.  I had some relief so was grateful for that.  Later that day I realized my adductors were so painfully tight all the way from their attachment down all the way into the medial calf into the foot.  Burning pain, inflammatory pain, a little nerve pain all mixed together.  I was angry at myself for not just getting them released in ART, but it was too late, so just had to deal with the misery.  I do have a scraping tool I bought similar to Graston (but way cheaper) and had my husband basically do myofasical release over my whole back, legs, and pecs with a big focus on the adductors of the legs.  It helped a little.  Sunday we went at it with the tool again on the adductors and he also did some deep tissue massage to them which helped with the pain some too.  When I went back to PT today I told her about the awful 5 days and crippling pain (because I should mention when something is as tight on me as my adductors have been, my whole body compensates for that, so pain is much wider spread then just that muscle group-low back, SI joint, both legs, calves, feet) and how I got limited ART, and she said if it gives me relief through this process, then get it done to whatever muscles I think I need it to, and she has no problem with that.  She said she was happy I flared because it gave her good information on what I can/cannot do, so we scaled back several things today and are hoping this will be a good baseline for me.  We’ll know tomorrow I guess.  Once we get my baseline then we will know how to progress me.

My husband had the day off and accompanied me to the PT appointment today to talk to my PT and see if there was anything he could help me with at home.  She showed him how to do some trigger point releases on my adductors and talked to us how to do them on several other problem muscle groups of mine as well.  He also got to see how basic the stuff I am doing is and how much I struggle with it.  It was very humbling to me and especially to my husband to see one of my exercises tonight and how much I struggled with it.  Basically I stood close to a wall and had to stabilize one hip while lifting the other leg just a few inches to touch my toe to the wall.  I had to close my eyes to think first finding a pelvic neutral position (I was wearing a biofeed back iPod device that would let me know if I broke out of pelvic neutral by beeping at me), then once I got that down I had to think about the sequence of recruiting the deep abdominal muscles and firing them, then think about recruiting the stabilizing hip/glute muscles and then get them to fire while holding the ab ones, then I had to think about lifting the opposite leg a few inches and engaging the hip flexor in that leg to lift it up and tap the wall and hold it all for 1-2 seconds.  I only did 5 on each leg, but each time it took so long just to get myself stabilized, and my whole body would shake because it was so hard to hold and coordinate everything.  My husband was shocked, saying to the PT that basically that’s very simple what I did, like basically breaking walking down into slow motion and I could barely do it, and she said yes, that’s how weak I am with poor endurance and very poor motor planning.  What comes natural to most people takes like 10-15 seconds at least for me to try and think about and coordinate in my brain, then to actually perform it in the correct sequence even longer.   That shows me how much compensation must be going on each day in my body with just very BASIC things like moving around my house.  Ohhhhhhhhhhhh it’s going to be a long road.  I’m hoping I don’t flare too bad tomorrow, but PT said I may flare up some for the next 6-8 weeks until I build that core endurance and learn to coordinate my muscles better in everyday movement…………so basically to expect that there will be possibly many more bad days to come, but hopefully they will be less intensive and less frequent as time passes.  I want to believe her and hope this is true, it’s so hard  after living in this body like this for so long now.  I watch people move naturally everyday without pain like it’s no big deal to walk, sit, stand, do anything really and I’m fascinated by it.  I constantly think how much people take for granted the little things they do everyday, how much I took it for granted for so many years.  If I ever am pain free again in this lifetime I will not take it for granted.  It would never have crossed my mind to just get up and run out to the store to pick up a few things, to go outside and play ball or a game with my kids, to walk to the garage fridge from the kitchen to grab the extra milk when we run out, but these simple things have become so overwhelming and stressful when I try to do them because I know what I will feel like from putting the extra steps/effort into my days.  I’m not complaining because I’ve come to accept (most days anyways) that this is my life right now, but hopefully not forever.   I know others are suffering similar and want them to know that someone out there can relate, because being in chronic pain for years is a lonely, lonely place. that you feel like nobody can understand.  I don’t expect anymore most people to understand.  I am happy that my husband has come to understand it from watching me over the past 3 years, and he is so awesome and helpful and supporting, I am so lucky to have him.  I also feel very blessed besides my husband to have my kids (who just today after I told my daughter someday I hope to be better so we can go out and do fun things together says to me “mom you are fun now,”—tore at my heart hearing that, just what I needed today)and to have my parents close by.  They just love me and support me unconditionally no matter what and are the people who keep me getting up and going forward on a regular basis.  I continue to try to keep my heart lifted up to God, I know he’s with me even when my brain try to tell me He’s not.  It’s not always easy to keep going, but then again He never promised life would be easy, only that He would be with us.  I’ll update in a few weeks, thanks for reading, until next time….