Faith and Trust

It’s been a year since I’ve checked in here.  Last year was the last time I posted and it was April 4th, 2018, my 39th birthday.  I reflected on my 30’s and all that happened, the good and the bad, and my walk with God in the mess of it all.  As my 40th birthday has been approaching I’ve spent a lot of time again reflecting on these past years and the toll they have taken on me physically, mentally, emotionally, and spiritually.  I’ve spent a lot of time reflecting on the most significant moments in this journey of hip dysplasia, surgeries, EDS, and suffering from chronic pain/loss of my former lifestyle. Some of the questions I have struggled with for years on/off continue to resurface as another year has gone by and not much has changed from a pain/physical standpoint.  I’ve been once again submitting these questions to God, sometimes getting partial answers and sometimes not getting any answers at all. Questions such as: How am I supposed to function daily when it feels like I’m walking through the fire and never quite get to the “other side?” When I want to dream of and make plans for my future, but once again realize that those dreams will never become my reality, and no amount of hard work or anything that I do or don’t do can make them happen. What do I do when my entire future looks like a question mark because I really cannot make long term plans to see past a few days or weeks at a time? When I don’t know what the future holds because all natural signs point to things looking bad or worse.  When I’ve asked for the thorn to be removed from my flesh time and time again and the Lord, for his purposes, chooses to leave it. If I feel this much pain at 40, what will I feel like at 50 or 60 or 70?

These are the questions that I’ve been wrestling with once again the last several months. I have known for years that I would never be back to my “normal” self after all of the surgeries I had and with my (unofficially diagnosed) EDS which has progressed (and likely will continue) with age l, but I had hoped that I would be in a better place than I am right now physically after 6 surgeries. I’m coming to an recent realization that when God promised me that things would be “ok” back In spring of 2014 that that “ok” meant even more sacrifice and surrender than I realized at that time, and that it wasn’t just for a period of years, but for a lifetime.

A week ago as I sat with God asking him if I had to live another 40 years with the pain and limitations I have, because I don’t think I can, he gave me the picture that has been shared on Facebook of what the first day in heaven will look like but I was the girl in it:

I sensed while seeing this picture in my mind that he was telling me that I only have one opportunity in this world, just one and that’s it.  This is all I have here, and I have to make the best of what I’ve been given. That it will pass in the blink of an eye, and then I’ll be eternally with him and I will feel amazing!  I felt like he was asking me if I would choose to joyfully sacrifice all of my plans that I had made vs choose to live in sorrow/sadness or bitterness. Would I pick up this cross that I’ve been given to carry and continue to follow him where he leads me giving him my full trust?  The “correct” easy and fast answer of course is yes, but I felt like he wanted me to meditate on this and not to jump with the correct “church answer.” That I am supposed to process what this really means and allow myself to go through another level of grief as I give up even more of what I thought my future would be, even more of my “independence” that i once prided myself with and that I’ve been having to give up and die to little by little the past almost 8 years now. “A life fully poured out” is what I’ve been hearing for a couple of months now, like that is what he is asking of me. I don’t even know what that would look like to be honest, but I feel like he’s asking me to give him the last parts of me that I may have been holding back, waiting and hoping to get better and get some old “normalcy” and “predictability” back in my life again. To fully let go of whatever I thought would/could happen and live day by day reliant on him for what I am to do now and for what is next.  To yes, pray and ask for the pain to be taken, but to be fully ok if the answer continues to be no. This is easy some days and hard others. There’s never a second that I am unaware of pain, there’s always a part of my brain that is processing it and trying to suppress it so that I can function and have conversations, so that I can work and pray and be part of what’s taking place around me. It’s never not there and I can never “forget” that it’s there, even when I’m smiling and laughing. Some days I’m just not sure what to do with this because it feels like more than I can handle, so I just tell God how I feel, how much it sucks, and to help me please get through another day. Yet on the outside, people who look at me think I am fine and have no idea. But that’s ok, it just testifies more to God’s strength which carries me through each day.

To catch you up on what has happened this past year since my last post, I started heading back to the gym in April 2018 (after my January 5th, 2018 6th hip surgery) and feeling better little by little.  We went to Guatemala to see Yago’s family during the summer, I was getting stronger and the trip went pretty well, and by August I was able (with pain and having to sit 15-20 minutes here and there) walk the whole day at Cedar Point and ride most rides.  I hurt a bit afterwards and limped a lot throughout, but was so excited I didn’t need to use a wheelchair at all.  It had been 7 years at that point since I could walk that much and go somewhere like that without using a wheelchair or electric scooter.  I was starting to get stronger and work out 3 days a week and was feeling better and closer to “normal” in September and October. Unfortunately old temptations started back up and I became a little bit overconfident again. The temptation to push myself with exercise and nonstop activity was so strong and I began to fall into it, despite the lie that I tried to tell myself that I wasn’t. In early November everything suddenly went backwards once again. There was not a “moment” when something happened, it was more of a slow progression over a couple of weeks.  My body started to hurt and I kept pushing through until the point I woke up one day and was in horrible pain in my hip and back and all over. It’s been almost 5 months and I am nowhere near close to how I felt prior to early November. I don’t know if I re-tore something in my hip or it was an EDS flare up that just isn’t improving or if it was something else. On top of the hip and back pain (my “normal” stuff that flares up) I had some new medical issues arise and saw a new specialist who said I can learn to deal with my new issues or fix them with surgery, it was up to me, but there is not really another option to improve with these issues, and they likely will get worse over time.  I was pretty much at another really bad low after this appointment and had to give a new set of frustrations, anger, and fear to God once again as I drove home with the tears flowing.

2 Corinthians 12:7-9 says “…Therefore, in order to keep me from becoming conceited, I was given a thorn in my flesh, a messenger of Satan, to torment me.  Three times I pleaded with the Lord to take it away from me. But he said to me, My grace is sufficient for you, for my power is made perfect in weakness.” I’ve read this scripture so many times over the years, but only the past months did the first part really stand out to me, the part that says “to keep me from becoming conceited.” I realized that day that the temptation to be proud and do things myself is still there strongly when I physically feel good, and perhaps this is part of the reason why God will not fully heal my body.  I’m forced every single day to yield to the things in my flesh that I want to do. I cannot take credit for anything because I have to rely so much on God. My mind and my body fight each other each day and I want to scream out “it’s not fair,” but instead I find myself having to pour all of these emotions into staying connected to God in prayer, submitting all of my wants/desire/dreams to him and not let the negative thoughts take over. I have learned so much about yielding these last years, and I continue to grow in learning about this each day of my life.  

When I step back and look at my life as it is now, none of where I’m placed or what God has called me to do (leading a prayer ministry) would be happening without the level of suffering I’ve gone through.  I see purpose in all of it and I’ve come to see that there are somethings that I could not have learned the easy way, things that I could not have learned unless needing God, not just wanting him, but really needing him to get through another day week after week, month after month, and year after year after year.  I know there are people reading this that fully understand what I am talking about, and there are others who may not. And both are ok, I hope and pray you never have to walk through deep long term suffering, but if you do or if you are, there is so much good that can come out of it. You just have to keep your eyes and mind focused on Jesus and to not look at your pain, and you have to keep your heart open to what he wants to do in it and through it, even if it’s really really had and out of  your comfort zone and doesn’t make sense. When I learned to start doing this, and started following him in obedience the road he set before me it has been worth it. It doesn’t mean that it’s been easy or that it is easy now, but it is easier then it was 5 years ago. There is still though a small part of me that surfaces from time to time that desperately wishes to be normal and do the things that gave me pleasure in this world, but I just have to keep submitting those parts back to God and remember that although in my humanness I feel like I can control things, at no time am I ever really the one in control of anything.   And I know God sees and hears my cries in those moments of weakness but I’ve hear him say “I see your sacrifice, I see your tears,” and “you are never alone, and you have never been alone.” I know these words have been from God for me, and I know that he has been with me each and every moment, through each and every step he has never left me. I have felt his presence at the lowest of the lows and that is why I have faith to trust him no matter where he leads me. So I continue to turn to him and give him my fears, my tears, my pride, my frustrations, my dreams, my plans, my future, everything (most days anyways when I’m not trying to fight against him), and leaning on him and trusting him wherever he leads me, knowing I’m just a mess on my own. But thank you Jesus that I am never on my own.

So I’m not sure what is next, I’m praying about calling my hip surgeon and making an appt to get his take on things, to find out if he thinks I re-tore something in my hip.  I’m also praying about the surgical recommendation from the new specialist, but so far each time when I ask God if I’m supposed to have that surgery I hear a clear “no.” So for now I am trusting that answer until I hear something different and try not to let my mind wander down the “what if” path that it wants to some days.  I just want to take a moment to say that I know many of you reading this have been following this blog for years since I started it back in spring of 2013 as I was heading into surgeries #1 and 2, and I just want to say that I really appreciate that you have been on this journey with me from early on. I’m praying for each of you now that God pours out his blessings on you and your life and that you come to know Jesus a little bit more as you’ve read how he’s worked in my life, in the midst of my mess these past years.  I’m praying that anything you take out of this will point to Him and not to me, and that God receives all the glory he deserves. Thank you for reading and following along:)


3 months post op, and a look back through my 30’s

Tomorrow will be 3 months since my most recent surgery.  Time has flown by. I realize I haven’t written or updated this blog since I’ve had surgery and thought it was time to open up and share about it.  

The surgery itself went well.  We drove down, got taken right in, prepped for surgery, had the surgery, and was back out and in the car within a few hours.  I don’t remember much from that day, it’s all such a blur now. I was anticipating a few weeks of rest and relaxation, but that didn’t go as well as planned due to some school snow days.  It’s ok though, God did allow me a good week (week 2 post op) of rest and time alone without much stress or worries to spend time with him and fully rest (physically and mentally) which was so needed.  

The pain was manageable and I could tell that something was different fairly early, different in a good way.  I found out at my six week follow up that ¼ of my hip labrum was torn off, and required 4 anchors, and my surgeon had to shave a little more bone off too (which I was not anticipating).  I also found out I have some arthritis already, which I didn’t have last time he was in the hip joint in late 2014 so that was a little disappointing to hear, but he said he smoothed it down and it wasn’t too bad.  He said I would need a hip replacement in the future, but we are hoping to get me to at least age 50 or more first. I’m choosing not to focus on that though, because with God all things are possible so despite what the medical personnel see I may never need one.

I’ve been traveling to Columbus every 2-3 weeks via my friend or my dad to see my PT down there.  It takes a whole day to go down, get PT, and come back, but it’s worth it to have the right therapist who knows me, and knows how I don’t recover like a typical hip patient, and pushes me enough but not too much.  He makes the trip worth it and I don’t trust any other PT after my 3 bad experiences locally from my first 3 hip surgeries. My pain lately has actually been more my low back and last time I was in Columbus 2.5 weeks ago my PT said that I still had some weakness and some things to work on, but I was becoming less of a hip patient, which I took as good news.  We are focusing more on core stability now. With my hypermobility syndrome and the wear and tear of my back from all of the years of hip issues and surgeries I am in constant pain in the low back area and often my SI joints too. Sitting for any period of time and doing activity requiring bending and turning increases the already existing pain, but with the exercises my PT gave me last time I was there I have noticed a little bit of improvement.  I still have to be careful to not overdo it with my hip. I made it through the grocery store the last two weeks, and this past weekend did it without my giant hip brace which I thought was good progress! I overdid it on Easter though and have paid the price the last few days, but hopefully with a bit more rest this flare will subside. I used to freak out about my pain flares, but now I know I just have to rest and wait them out.

So today is my 39th birthday.  I’ve been meditating a lot about this day in the previous weeks leading up to today which starts the last year of my 30’s.  Yago and I chatted about this a little this morning. My 30’s definitely was not what I had envisioned them to be. In my 20’s I was getting married, traveling a bit, buying a house, living life, being a little crazy, and then having my babies.  I expected my 30’s to be what many women envision: settling down, raising my kids through their elementary years, taking them on trips and enjoying fun experiences with them, enjoying my career since I would have been in it 10+ years and knowing pretty well what I was doing, spending time with friends and family, feeling experienced and somewhat mature but youthful and full of energy to do lots of active things…  What I didn’t envision was chronic, debilitating pain, loss of my career, loss of physical fitness and even ability to do most of the basic active things I wanted to do, 6 surgeries and recoveries, having to explain to my kids over and over again for years why I couldn’t do the things they wanted to do together, and my body feeling 80 vs 30.

However as I meditate on those things I almost laugh now because from a worldly standpoint one would think how awful my 30’s have been (and there were many rough years early in my pain and surgical journey where at the time I would have agreed), but honestly now as I look at all of the bad, I can tell you that actually this was the decade that saved my life.  People have always described me as nice, fun, always smiling, enjoys people, etc… and that is how I was on the outside and at times on the inside too, but there was a ton of junk hidden inside. I was actually a very self centered person who was ruled by insecurity and always doubting myself and comparing myself to others and being envious or judgmental or prideful in order to make myself feel better.  This was mostly on the inside, but came out at times as gossip and ugliness to those close to me. I was full of fear and worry and ruled by my emotions. I was so broken inside but didn’t even know it. I lived life each day looking forward to the next ‘fun’ or ‘good’ thing that was coming up in order to have something to look forward to and hope in, the next thing to give me “happiness,” which was just such a temporary thing.  

Through my pain and suffering and having to lose the things I held as my ‘idols’ (my physical fitness, my ability to be active and do ‘fun’ things, my career, my ability at times to provide what my kids and husband needed, my independence-for weeks or months after surgeries having to rely on others for things that my prideful self didn’t want to) I was forced to be alone and inactive.  As an active, exercise freak who is an extrovert these were some of my worst fears coming true. So I had the choice to push into God and dive into his Word and bring my pain and my hurts and junk to him, or I could turn away from him and lean into my pain and choose bitterness and anger. I choose to push in to God, I choose to spend much of that time reading my Bible for the first time in my life, to spend time giving him my heart and asking him to purify it and clean out all of the junk, and eventually I choose to accept my limitations and that my life was never going to be what I thought I wanted it to be and trust that what God was going to do with it was going to be better than whatever plans I had.  None of this was overnight or without struggle or depression, deep depression early on, but God is the one who provides (Jehovah Jireh) and the one who redeems (Adonai Haggo’el). These things he has showed me over and over again.

So even as I lay here writing this still in pain after my weekend flare, I see my 30’s as the decade that God saved my life from the shallowness and self centeredness that I was living in.  He has turned my fear and worries into peace and a trust in him. I have been broken at every level and have seen all of the junk that has accumulated inside of me, and I’m not ashamed of it anymore.  It wasn’t pretty to unpack, and there’s still work to do, but God has healed so much inside of me already. He has given me new life and purpose and has filled me with joy from him vs happiness from my circumstances.  He has surrounded me with good people whom I care dearly for and he has shown me that my life is not all about me, it’s actually about loving him and loving others. I still have to fight my selfish nature at times, but the awesome thing about God is his grace is there when I fall backwards.  I just need to repent and turn back to him. Instead of the OT career I had before, I’ve been given an amazing opportunity to lead a prayer ministry and I get to pray with and for many people who are walking through so many hard things, and I get to see how God shows up and touches people through prayer, prophetic words, and through healing (spiritual as well as supernatural physical healings) and how much at work he really is in the world around me.   

So I will always look back on my 30’s as the years when my life really began.  The years when I came to know the Lord and was broken and pieced back together little by little.  The years when I finally came to know what love really is, and how to receive it as well as how to give it.  The years when I really started to live my life following the Holy Spirit’s lead vs my own lead. I’m so grateful to God today that his plans are always better than ours, and that I don’t have to have everything figured out.  He is so, so good.

Thank you for reading and for your prayers for the surgery.  I really believe they helped, as this was the easiest recovery yet.  God Bless!

30 Days until hip surgery #6…yes I really did say #6

Everything happens for a reason and there are no coincidences.  Every time I have written a very positive blog post here in the past 4.5 years something happens almost immediately that sets me back.  It’s truly amazing how that works. Six months ago I wrote in this blog of the amazing 15 month journey the Lord had taken me through since the time I had last written before that in early March 2016.  The improvements I had made, like being able to go to the gym and gain some strength in my hips and pelvis, the miracle on the mountain in Peru, the 4 day trip to Disney with my family, and despite the limitations and pain I still had, the Lord had really answered my prayers to live in a “functional” level of pain where I could do things like volunteer in various ministries, grocery shop, and live a somewhat “normal” life that I hadn’t been able to do for so long.  I was in a really good place and was also getting ready to lead a 3 month class at church on helping people learn how to hear God’s voice when all of the sudden things fell apart.  I don’t believe it was coincidence in the timing of how things went down, and I know in part what happened next was partly a spiritual attack.

Literally the week after I wrote that amazingly positive May blog post I had pushed myself with my right hip a bit too hard a few days in a row doing various activities and ended up in a major pain flare.  I was trying to wait it out and be patient, but after a few days it didn’t start to get better like normal.  I was excited for summer.  School was about to end for my kids, our 15 year niece was about to come stay with us for 6 weeks from Guatemala, and we had a 4 day trip to Washington D.C. planned for mid-June.  I kept praying I would get better before all of these things happened, but I didn’t.  The bad pain lasted almost 9 weeks which was the majority of the summer.  I had to limit my walking, ended up going to the gym maybe once a week doing a very modified workout, and using the wheelchair in Washington D.C. (which I really was hoping wouldn’t be needed there, but I had no choice-it was either take and use the wheelchair or stay home while the family went without me).  I was very discouraged and frustrated.  I could not figure out why my muscles continued to stay in spasm vs relaxing.  After a couple of appointments with my myofascial therapist I finally started to get back to my baseline pain by the beginning of August.  

Throughout the summer I kept wondering if maybe something was wrong still that could be fixed, that maybe I should go get things checked out to be sure.  I had thought that I had torn a muscle the week after my October 2015 surgery when I felt so good that I squatted to the floor during an event we hosted at the house and I felt a pop or rip or something at the front of my hip area.  My surgeon had said I probably tore some scar tissue and with times things would get better-which they did, but after the long set back I was starting to think maybe I should contact my surgeon or at least some surgeon to further investigate.  In early 2016 I was so done with surgery and doctors and therapies that when mine stopped taking my insurance I thought the door closed and it was a sign.  I realize now though that it wasn’t as much as a closed door as it was a much needed break I needed mentally and emotionally from having to focus the majority of my mental energy and time on dealing with all that came along with my ongoing medical problems.

As I was processing all of this with my husband in August he told me that we had received a letter from my surgeon in early 2017 that he had picked my insurance back up again.  I prayed and felt led to call and make an appointment.  I knew to expect a 2-3 month wait and was prepared for that.  I called on a Monday late August, and I was informed that he had a cancellation that Wednesday at 11:30, and they asked if I wanted to take that appointment.  I knew it had to be a God thing, because it is so hard to get into see him, and being that it’s a two hour drive away 11:30 was the perfect time where I could get my kids off to school, drive to my appointment in Columbus, and be back before they get off of the bus.  I felt like it was God confirming to me that I was supposed to go because I had been having doubts still as to what to do, and with the door swinging wide open for this it confirmed to me that this what I was supposed to do.  

I drove to Columbus (with my dad accompanying me) in good time, got some new x-rays taken, and then saw my surgeon.  I explained to him about the ongoing pain and limitations I still had and the major set back over the summer.  He examined my x-rays, examined me, we chatted some, and then he proposed that I had likely re-torn my hip labrum in 2015 when I did that squat the week after my last surgery in 2015.  My symptoms lined up with a labral tear, but they were new to me.  I had labral tears in the past, but I also had dysplasia in conjunction with them so my symptoms never lined up with the “typical” labral tear symptoms that I have now.  He proposed I have an MRI and a diagnostic injection into the hip joint to make sure that was what was going on.  I set up those tests followed by another appointment with him all in 1 day in Columbus at the end of September so things would line up well and I only had to make one trip down.

Test day came and I had the MRI then hip injection. The purpose of the injection was to determine if the pain was coming from inside of the joint.  Immediately after the injection if I felt less pain then it would mean the source of dysfunction was from inside of the joint (likely a hip labral tear), and if I didn’t have less pain then it would mean the source of dysfunction was from outside of the joint (like a torn muscle).  I was supposed to cause my hip to hurt as much as I could before the tests.  I’m pretty sure I looked like a fool running up and down the path to the dr office while jumping and hopping trying to stir up my pain to a high level.  The injection was not pleasant, but as soon as the dr was done I had complete and immediate pain relief.  I knew my answer right there.  I saw my surgeon two hours later and he felt positive it was the tear.  The only choices became live with it (like I have been) and deal with the ongoing pain/dysfunction, and higher level pain flares that come and go based on my activity level, or to have surgery to fix it.  I don’t anticipate I’ll ever be fully out of pain, but if I can improve it some by adding stability of having a fully intact labrum I think it will be worth it to move forward.  So I scheduled surgery for January 5th, 2018.  

I felt peace with the decision when I left Columbus that day.  I never imagined back in winter 2013 as I was waiting for what I thought would be the first of 2 simple hip surgeries that I would actually end up having 6 surgeries over a 5 year period.  I am so glad that God did not show me what laid ahead, because I’m pretty sure I couldn’t have handled that information mentally.  However with each obstacle and surgery he has given me what I need to keep going.  When on the surface things looked so bad at so many points as I look back over my life over the past 6 years, BUT God has used it all for good.  I have been broken, cleansed, healed, (not necessarily physically, but emotionally and spiritually) and used by him in ways I would have laughed (in disbelief) about had someone told me years ago.  The Lord can move in many ways in our lives when we lay down our own agendas and follow him where he wants us to go.  Usually it is to a place that we would not expect.

So as I’m now 30 days out from surgery the reminders are starting to pop up.  Reminders that I won’t be able to go to the grocery store or Target when I need to pick up items, that I won’t be able to go to the gym for many months, or I won’t be able to do things like carry the laundry basket or run up the stairs to grab something.  I won’t be able to move and do things like sit down/stand up/walk/go up steps/etc…without having to fully calculate what my leg is doing at every second.  It also means sleeping on my back for many weeks (which I hate) and not driving for likely 4 weeks, possibly more, and a bunch of other things that when I allow myself to “go there” I start to feel frustrated already. I’ll be going back to a level of dependency on others that I really didn’t think I would have to go back to again.  That has been one of my hardest lessons learned through the other 5 surgeries, that I can’t do things alone, and although I know I need the help, it still sucks to have to ask for it.  This time I am working part time too at a job I love, so taking a little less of an active role, even if it’s just for a month or a little more, will be really hard for me.  I know though that because of all I cannot do during that time that the Lord and I will be spending much more time together than usual, and that out of that time I know good things will come.  

So please when you think of me between now and January 5th say a prayer for me.  Pray that surgery will go smoothly, that the recovery will be so speedy that it will be almost miraculous, and that my husband and kids will fair OK while I’m down and out and unable to do the things that they are used to me doing for anywhere from a few weeks to a few months (depending on the task).  I am trying very hard to hand any fear that comes upon me over to the Lord immediately so that I don’t stay stuck in that bad place, so please pray too that as January 5th grows closer and the fear keeps trying to sneak in that God helps me to overcome it right away.  Between now and then we have my daughter’s 11th birthday party, a 7 day cruise with my husband’s family, Christmas and New Years, and my sister-in-law and niece coming to stay with us for 2 weeks.  There’s so much good between now and then that I really want to focus my mind on all of these things, in addition to my job and volunteer duties, and not worry about the surgery until the evening of January 4th.  

Thanks so much for your prayers, and I’ll update this after the surgery.  I want to thank those of you who’ve shared someway in this journey with me over the past 6 years.  God is so good in how he has provided the right people to come into my life at the right times whether it has been to pray for me, to help with a physical need, or even just to give a reach out and give a word of encouragement.  I am especially grateful tonight for the wonderful friendships he has given me, particularly in the past 1-2 years, as well as for our amazing families who have helped so much on this journey.  Relationships matter, people matter, and most of all Jesus matters.  Everything else takes a backseat to these three things.  I encourage you to join me on focusing on these three things in your own lives over the Holiday season.  I pray that God blesses each one of you, and thanks always for reading!

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 Not easy, totally supernatural thing from the Lord.


(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.


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.

cpm pic

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

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

crutches pic

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

full view

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

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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.


     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).


     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.


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

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

FullSizeRender (1)

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


     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….”