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.

2 months op, slowly getting more active

I’ve wanted to update this for a while now, but things have gotten a bit busy with several new things I have added to my life, so better late than never.  The surgical recovery was harder than I expected the first couple of months.  After I saw my surgeon at the 6 week check-up and heard a little more about what all he did it made sense to me why I was struggling so much.  It wasn’t as simple of a surgery as I had imagined. He basically had cut through fascia and moved and clamped back 6-7 muscles in addition to partially detaching one muscle to shave off the bone that was causing my tendons to rub and create inflammation and pain, and then reattached the muscle tendon afterwards.  Then I had my set back at 8 days post op of going into and getting up out of a deep squat with all my pressure on that leg. Needless to say I was pretty swollen for a few weeks and very bruised.  The left side where I just had screws removed took about 6-7 weeks to  be not very sore, and the right side where screws were removed and all the work done I mentioned above just the past couple of weeks is not too sore anymore.  I still have a lot of weakness, and I do get pain at the surgery site most days, especially when I overdo it (yes, I somehow have managed to still overdo it and not listen to my body despite 5 years of pain and 5 surgeries; clearly I’m a slow learner and have issues still with going “slow”) or when I sit too long.  At least the surgical pain is gone.  I received a brace at my 6 week appointment as well to wear on my right hip when I’m up walking a lot to help give it stability since the core stability and deep hip muscles are pretty weak.  Without it the muscles tire quickly and my pelvis rotates and I start to limp and all kinds of crazy compensation pain happens in various areas.

I have been doing my own PT here at home, and have felt myself get a little stronger, which is exciting, but also a dangerous place to be.  We went away last weekend to an indoor water park to celebrate my daughter’s birthday, and for those 2 days I probably went up and on the 4 story waterslides (while sitting in a tube, I no longer can do water slides without the buffer of the inner tube under my bottom to protect my hips and SI joint) at least a dozen times.  The majority of the rest of the time I was found floating in the lazy river or in the adults only giant hot tub (like a mini heaven for my pain!).  I expected to be in way worse pain after the weekend, but it actually was my normal pain only!  The next day I decided to try and start on my exercise bike which I haven’t done in forever and my quads fatigued quickly and I was getting out of breath, when I checked my timer I saw I had only been on it for 1.36 minutes.  I had to laugh at myself.  It has been 4 years since I have been able to exercise (and 4.5 since I had to give up running), but in my head I still am in good shape, clearly this and my clothes being  2 sizes bigger than from  my working out days tell a different story.  So it was another slight blow to the ego.  Anyways, I upped my PT stuff and actually felt better after the simple work out.  The next day I felt my normal level of pain still, so I decided to do everything a second day in a row (which I have never done with my PT stuff before because it always used to flare me bad if I did more than my simple exercises 1 day in a row).  I added a minute to the bike to do 5 minutes total and did the same PT work out as the day before.  Again I felt decent.  These days I also had run a few errands (with the brace on) so was out of the house a couple of hours too.  Wednesday came and I got cocky and decided to do it all again and add another minute on the bike.  After it I felt fatigue of the muscles which was good, except I didn’t factor in that I was going to be volunteering for 2.5 hours that afternoon, where a large amount of it I would be standing.  And I forgot my hip brace when I was volunteering.  I’m thinking you can see where I’m going here.  Yesterday was NOT a good day, today is not great either.  I’m just taking it easy and waiting out the flare until muscles calm and I can try and loosen them up a little.  So that is why it is a dangerous place to be………I feel better, I do more, then I do too much more, then I pay the price and go backwards with more pain, then cycle starts again.  I think at times I am the definition of insanity.

So where is God in the midst of all of this these weeks.  As I mentioned I have taken on a few new things, which has made my days a bit more chaotic, and I had several days where I wasn’t getting much time with the Lord.  I felt the difference, I felt convicted, I felt like I was suffocating and/or drowning at times as a result of not being connected daily with Jesus.  I had to make this a priority.  I am NOT in any way a morning person, but I forced myself to get up early and get ready so I could start my online classes as soon as the kids left on the bus, then after a morning in classes got all of my errands or volunteering stuff done, then once the kids were home, homework was done, dinner was done, and kids and Yago (he is an early bird-the opposite of me) were in bed, I prioritized time with the Lord nightly.  I know many people say that morning is the best time to do this, but for me, my brain does not function well in the morning, so this time when I am winding down helps me connect and focus on reading the Bible and connecting with Jesus better.  Even if it has been crazy late, I do not go to bed without that time, I need it like I need water and food.  The verses from John 15 stick in my head all of the time now, about how I need to remain in Jesus and He will remain in me.  Apart from Him I can do nothing, and I will not be able to produce any fruit if I sever myself from Him.  No matter how busy things get in my life, I know I cannot allow myself to not be severed from the vine.

As this year comes to an end I have found myself daily with a large amount of gratitude.  When I look back I see the prayers God didn’t answer (for good reasons I know, even though it was hard to hear His no at those times) and many that He did (in regards to this 5 year journey of pain and surgeries as well as in other areas of my life).  I am still in pain daily, but nothing like I was 3-4 years ago.  For that I am so so so grateful to God, amongst many many other reasons as well.  At times I am just overwhelmed with love and gratitude and thankfulness.  Especially in this Christmas season when perspective can get shifted away from the REAL meaning of Christmas, I hope that each one of you can set aside time daily to give thanks to the Lord for what He has done for you and/or given you throughout your whole life, but especially  through this past year. Today we and those we love are here, tomorrow…….well, there are no guarantees.   Maybe things have gone pretty well for you and you haven’t had to walk through any fires yet in your life, don’t take that for granted (I sure did before the past 5 years), but give thanks and praise to the Lord for allowing that.  For those who have walked through, or are currently walking through a fire, I pray that you come to know God and his love and that you pick up a Bible and start to read the Gospels of Matthew, Mark, Luke, or John, where you can come to really know Jesus  and not just know about Him.  He can and will carry you through whatever fire you are in, especially when you are too weak to walk on your own.  There is purpose in all of our lives as long as we still have breath, and that purpose is not just to pleasure ourselves and our families.  We may not know right now what our true purpose is, but if we keep seeking God, listen to Him, and take those steps of obedience that He asks us to take for Him, He will guide us towards His purpose for us, and fill us with a joy that we cannot get here on earth in any other way.  This type of joy is not circumstantial, because circumstances can and will change.  This type of joy only comes from a relationship with our Heavenly Father.  I hope whoever reads this reflects on what I’ve said here, and that you have a wonderful Christmas!  I will write more after my next appointment with my surgeon at the end of January.

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.

6 months post op, not where I was planning to be

May 22 marked six months since my RPAO and hip surgery. Everyone kept saying 6 months is the magic number where things would start to turn around. I convinced my want-to-be-naïve mind to somehow believe that despite all the odds against me, that I could possibly have a “normal” recovery time limit. LOLing at that, seriously. Nothing on me is “normal”, I’ve come out of that denial now.

Anyways, at 5 months as I was getting a little better I got impatient and I did a few things to try to “speed” up the process. ART, massage, personal training, and started trying to do more normal things like yard work. It was all a big big big mistake. I flared my hip and especially my back 4 weeks in a row to the point of absolute misery (tight burning fascial and nerve pain all through my back, legs, and both hips). I’m just now calming a little from the month of flares and physically feel like I’ve had at least a 2 month set back.

Mentally this month and the set backs have torn me up so hard inside. It was my fault for messing with “the plan” so I had a tremendous amount of guilt about my decisions and about hitting the magic number of 6 months and still being so limited in doing pretty much anything. I’ve been feeling quite useless to be honest, like my purpose is not one of much these days (or I should say years). I am not wired to sit and lay around. I’m wired to get up and go and move and help and serve others and have a job and be productive and to be active. It’s been 4+ years since this started, 3.5 since being pretty limited in what I can do, and 2.5 since being in bad pain with the activity limitations. Sometimes it just gets to me and I fall apart. Last week I can honestly say I fell apart, like apart in a way I haven’t done in probably over a year. Somehow I held it together during the days, but when night fell and everyone was in bed-the pain, the guilt, the feelings of helplessness came crashing over me.

During my major meltdown my husband spoke truth into me. I knew he was right in the things he was telling me, but sometimes I just get tired and overwhelmed and I don’t see an end to this pain and it’s just hard to push on. He reminded me that I need to take my eyes off of my circumstances and put them back on Christ. I knew he was right, I knew the road of self pity and depression would take me nowhere good, but that human side of me takes over sometimes wanting what I want–to feel good and “normal” and go to the grocery store and push a cart and not start freaking out that my muscles are spasming 15 minutes into the trip that I need to sit or cut the trip short. I actually made 2 long trips to the grocery store before my recent set backs, it was huge progress because I hadn’t done that in 2 years. They were not pain free but I did them and I didn’t flare bad, but now I’m back to not attempting that again-major blow to my hope in this process. Anyways, there are probably a hundred things I could list that I miss doing, I just use the grocery store as an example when trying to explain to others that the basic things that most people take for granted (and many complain about) is actually something they should be grateful for. I was thinking today how 1.5-2.5 years ago my body was an even bigger mess than now that when I tried to peel and cut potatoes my whole back and neck would go into spasm after 1 potato. I would have to call my husband to take over and I would have to just lay on the floor until things calmed. Crazy right. I can do 5-6 potatoes now before things start to get angry, so I count the little victories now. Not many people can say they count their victories by potatoes, lol.

I don’t let my kids use the word hate, but I have to admit I’m kind wanting to use the word hate with having EDS. I can handle it in most of my joints because they have a tolerable level of pain, but my spinal vertebrae slipping back and forth and being pulled whatever way my tight muscles pull them, I’m just tired of it. I can excuse the hip because it had major surgery recently, but the spine, I don’t know what it’s deal is. I’m tired of feeling like I’ve been hit in the low back with a hammer and then set on fire. Tired of ringing in my ears when I try and sleep at night, tired of neck spasms and pressure, tired of TMJ, tired of dizziness, tired of all these other crazy weird things that happen to my heart rate and blood sugar and random numbness in my hands and arms. I feel very alone and unable to relate to a lot of people lately. Then tonight I went to check these EDS Facebook groups I belong to but never go on, and as I scrolled through the posts tonight it made me not feel so alone. I was thinking “wow, I forgot how these are totally my people.” This is one place where social media can be such a help at making people NOT feel lonely and different, and can do a lot for one mentally (as well as help each other with advice).

I feel like I’m rambling, I should add I saw my surgeon two weeks ago and the X-rays as usual looked good, bones are healed. He wants me to come back in 3 months since I am struggling with muscle issues and such a slow recovery. I saw my PT too and he said although I was flared and in pain my strength was still increasing. I had 2 muscle groups still testing a little weaker, but they were stronger than a couple of months before; however the endurance of my muscles groups is still not there. He said my muscles will activate and support me, but only for 3-4 seconds and then they shut down, so we need to work on endurance of them; however I haven’t been able to follow the plan really great this past week because of the latest flare from the last time I saw my trainer 1.5 weeks ago before I quit. I always look so positive on paper with tests and imaging, but how things play out in my daily life–it just doesn’t go well often. Sadly that’s not what most doctors and PTs are looking at.

Outside of medical issues I’ve had some personal stuff I’ve been struggling with as well. I realize I put too much faith and expectations in others outside of my immediate family, which leads to disappointment the majority of the time. I’ve also had a couple of people minimize my struggles verbally and it’s been really hurtful to me and made me feel more alone. These past few weeks just have wore me down between the personal stuff I’ve been struggling meeting with the physical stuff flaring up bad and everything else just piled up at once. Again, I realize I’ve been fixing my eyes in the wrong direction. Matthew 16:24 has really been speaking to me these past days –Then Jesus said to his disciples, “If any of you wants to be my follower, you must turn from your selfish ways, take up your cross, and follow me.” My cross right now is my chronic pain and physical limitations and my selfish nature wants them gone and wants to be a little angry at God that I am not getting a lot better. However this is the cross I’ve been given to carry and to some extent will likely always be part of my cross thanks to EDS, so I need to continue on via the strength of Christ in me (because in no way am I capable of carrying on my own at all right now, not.at.all) and bare this cross and follow The Lord wherever He wants me to go, to serve Him however I can through my limitations, and just love Him the way He loves me–unconditionally. I need to stop trying to rely on others and solely rely on the source of my strength, my Savior. If this sounds like a whiny poor me post that is not what it is intended to be. This is me, a real person putting out my real struggles (physical, mental, and spiritual struggles). We love in a world where the impression of our lives we want to give others is “perfect,” but my life is not perfect and if anything on this rocky road can help others or point them to Jesus then I gladly share my struggles and imperfect life. This is my therapy as well, getting my thoughts and feelings out, sharing my journey of this hip business/EDS/chronic pain, and sharing how Jesus has called me, walks me with me, at times carries me through it all. He’s a pretty awesome guy. I’m lucky to know Him, and also lucky to have my hubby who knows how to point me back to Him when I start to turn my eyes out vs up.

Thanks for reading, I’ll post sometime after our trip to Guatemala. Say a prayer if you could that I can physically handle this trip without extreme pain. Thanks and God bless

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.