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.

3.5 months post op, surgeon follow up\

I saw my surgeon last week and he was actually happy with the way the bones look and how they are healing.  From a surgical standpoint things are great.  Likely I will need at least some of my screws out of each hip (which I hadn’t planned on) due to one in each side poking into my hip flexors when flexing my hips.  I don’t want to think about it at this point yet, I go back in May and see my surgeon again to talk about it.  Although it causes discomfort when flexing my hips, it’s the least of my worries right now, so I plan to put it off until after summer hoping that I can build some stability back into my pelvic and hip muscles before being cut into again.

I saw my PT as well.  He is happy, he sees the progress since I only go every 2-3 weeks to see him, but it’s hard for me to see.  I see the visible things, like how I  just started ditching my crutches for short distances the past few days (into/out of a restaurant and in/out of the YMCA where I go to walk in the water–which is now the main part of my PT since land therapy was flaring me).  It takes all of my concentration to make the muscles all around my back and pelvis contract and so my pelvis only drops a little bit, but I feel like the muscles are still confused and don’t know how to work together anymore and are super weak.  My pelvis has been twisted for at least 4 years now and my low back and whole pelvic area has taken a beating.  For a “normal” person they would be able to bounce back much better than I, but having joint hypermobility disorder (likely EDS-just don’t feel like following through with the rheumatologist suggestion of genetic testing) my pelvis and low back feels like it has all been stretched beyond repair.  Hopefully it hasn’t, but that is how it feels.  Burning nerve and/or facial pain I still have (although it is better than it was 2 years ago, so that is a plus), and I’m just mentally and physically tired from it.  Supposedly as I get stronger that will lessen, but I’m so sick of having it 24/7 for 3.5 years now.  It takes so much mental effort to try and block out the pain signals when doing anything, cooking, sitting, having a conversation with someone, pretty much everything I do.  The only time my brain is not flooded with these signals is when I am sleeping, which is why I love getting into my bed at night, and hate getting out of it in the morning.  Things I used to enjoy doing and look forward to when I was normal and active years ago now cause anxiety when I have to do them.  I have to weigh every thing I want to do each day and decide “how bad will it flare me” and “is it worth the flare.” I feel 35 trapped in the body of a 75 year old.  (By the way, if you don’t know what EDS is, it’s Ehlers Danlos Syndrome and is a connective tissue disorder that can affect many things in the body.  I have issues with many body systems, but the worst is that my joints are too loose.  Basically instead of my ligaments being like “superglue” that hold and support my joints in place, mine are more like “Elmer’s glue” and don’t hold them where they should be, so muscles and fascia tighten around them trapping nerves and blood vessels as a protective response to the joint not being stabilized correctly.  Affected the most on me besides my hips and pelvis are my low back, my neck, shoulder’s, feet, and hands.  The cool party tricks are no longer cool when you are 35 and in constant pain).

Anyways, earlier this month I went to a women’s conference at my church for Friday night and all day Saturday.  It flared me so so bad it was like I never even had surgery.  I was almost 12 weeks out at the time and thought it would flare me a little but not terribly.  I was so wrong about that.  The week after I laid on the couch crying in misery, angry at God, angry at life, angry at these past years and how I have not been able to be and do all of the things I planned, especially when it comes to my kids.  I was in a very low, dark place that I hadn’t been in for awhile now.  I thought about blogging then, I should have, so people can see that although most of the time I try to be positive and look at the good that has come from these past years, there are days when I am angry, frustrated, miserable, and still depressed, and it’s at least every couple of weeks where I feel this way.  Sometimes it for a day or two, sometimes when the pain is flaring me bad it can be for a week.  I isolate a little from the world when I am feeling this way, anyone who deals with chronic pain I’m sure can relate, but most people I know have never dealt with chronic pain, so it’s better and easier not to try and explain to someone who has no idea about it.  I used to try hard and explain, but I would just leave conversation feeling more frustrated, alone, and sad, so I don’t really try anymore.  That alone keeps me drawing closer to the Lord, because I know He knows, He understands, and that He is the only one.

I had a couple of weeks where I stayed off of Facebook except for when I had notifications, and I was feeling more positive then.  I want to know what’s going on in my friend’s and acquaintances lives since I live so much of my life in my house, but sometimes a picture or a post will just hit me hard and break me down mentally.  I really really really still miss working out.  I worked out since the time I was 13 up until over 3 years ago when I was forced to stop.  Pushing my body, whether it was a class, running, biking, swimming, lifting weights, etc… was a feeling I loved!  When I see a post of people working out or talking about their work outs it’s still very hard for me to absorb.  Walking into the Y I try not to look into the gym and workout studio because it still at times will bring tears to my eyes.  Today at the pool an elderly man started talking to me as I was walking in the shallow end, and after 15-20 minutes my muscles were telling me to stop so I told him I had to go because my body was tired.  He looked at me like I was crazy because he goes and walks over 2 hours a day in the pool.  I try not to compare myself to people because I have very unusual circumstances, and I know the Lord doesn’t measure us by our abilities, but it just plain sucks to not be able to do most of the things I love to do. I was so looking forward to when my kids were the ages they are now thinking about all of the fun, active things we could do with them: canoeing, swimming, hiking, playing tennis, bowling, etc… and I am just a passive bystander to everything we do now.  I asked my 6 year old last night when I had some praise music blasting if he remembers when he was little mommy dancing around the kitchen being silly with him— he has absolutely no memory of it.  My 8 year old has a few memories, but to my son I’ve always been a mommy in pain who can’t do anything.  I try really hard not to dwell on things that I cannot change, but I’m just feeling very very discouraged lately.

I do keep pursuing my relationship with the Lord though because I find my rest there, I find joy there (even at the same time as being depressed–it’s so hard to explain), I find comfort, I find shelter, and I find peace.  I see good He has brought out of this and know He will continue to bring more good as long as I follow Him.  However I do allow myself to cry when I need to, to be sad and angry when I need to, and to grieve the loss of my active life as I need to, and then the Lord gives me the strength to carry on somehow.  I have had so many people tell me “you’re so strong.” Let me clarify that I AM NOT strong at all, it is God who carries me each and every day.  I have NO strength of my own left most of the time.  Anyways, this feels like a long, rambling, not so positive post, but it’s where I am at today, I’m not perfect, I’m human and I am allowed to have bad days.  I see my PT March 20th again and will check back in after then.  Thank you for reading, God Bless

11 Weeks post op, staying patient with the slow progress

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

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

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

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

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

 

Some of my favorite versus on the hard days:

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

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

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

7 Week follow up with surgeon, good news!

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

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

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

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

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

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

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

 

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

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

Better view of the breaks

Better view of the breaks

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

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

weeks 3 and 4 post op

Well I forgot to write last week so I figured I would just group the weeks together.  Week 3 brought me getting out of the house for aquatic PT.  I went 3 times last week and then again yesterday and will go again tomorrow.  I did this starting at 3 weeks post my last PAO also and I have found it both times to be very helpful.  Moving the leg in the water in normal ways helps me to move more normal on land after therapy is over.  My hip flexors get tight (more than the “normal” post surgical tightness) for the day after therapy and sometimes the following day.  I still have been taking 1 muscle relaxer a day due to this, hoping to wean off of then in the next 1-1.5 weeks.

I also this past weekend went to see the opening night of my daughter’s play (in a small community theatre for grades 1-12) and had to do the whole sit-stand-sit–stand thing for 2 hours, but I made it through!  I went to church the next morning too.  Things like this still exhaust me, as does the pool therapy, but I can very slowly feel my endurance improving.  My appetite has increased as well and I crave protein in a weird way so have been stocking up on eating almonds and walnuts a lot in addition to my regular snacks.

I now get in/out of the shower by myself, can fully shave my legs (Yeah!!!), dress (I can do socks in a weird and somewhat painful way, but if needed I can do them, and when someone else is around I give in and ask them to do it…some OT I am huh; ironically for years in rehab I pushed independence on my patients with their daily living skills, yet I give into easy when it’s available,  lol), and can get shoes on, but still need help tying my right shoe.  For pool therapy I just wear crocs so I can just slip them on/off.  I also can prepare myself and the kids easy things like eggs or a sandwich, being creative to move things around the kitchen without having my hands free.  I am also able to sleep on my non-op side for 1-2 hours a night with little pain, and on the op side for around 30 minutes with discomfort but not terrible pain.  I can get in and out of the bed and car by myself.  I feel like I have some independence back with these things.  I still can’t drive (per surgeon’s orders) and my hubby won’t let me walk up/down the stairs on my crutches alone until I can weight bear.  Three weeks from tomorrow I go back to see my surgeon and get x-rayed to see if I have enough bone growth to start putting weight on my leg, and start the long and tedious process of trying to gain strength and endurance in the muscles without flaring them, and weaning off the crutches.

I am eternally grateful to my parents who have been incredible this recovery.  I am also so very grateful to those who have brought us meals 2-3 times a week to spare Yago the cooking in these crazy weeks.  We are so blessed to have so many caring and compassionate brothers and sisters in Christ.  I’ve especially enjoyed the time those who had time to stay a little while and visit and/or pray with/for us.  Thank you 100 x’s to all of you who have helped out, you know who you are and so does our heavenly father:)

I prayed going into this surgery for a “supernatural” recovery.  I didn’t know what that would mean or look like, but that word constantly jumped into my head.  Well I will say that this recovery has had less pain, more movement, more energy earlier than the other PAO I had on the left hip.  These I think are due to having 1 fixed, decent hip, gaining some core strength with the trainer last spring and with the Ohio State PT this past summer.  While all these things have been VERY nice,they are not necessarily “supernatural.”  What is supernatural to me is the fact that I have gone through this past month with a renewed peace, joy, and sense of hope inside.  The hope yes, that things will get better, but even more than that my hope is in Jesus and that He will take care of me and I don’t have to worry or put my hopes in this world.  The hope that He is in control and I don’t have to be.  When I stay in the Word daily I am reminded of His promises daily, and that brings joy!  So I do think of this recovery as supernatural in that way.

I am convinced after all of this that nothing brings you closer to Christ than suffering does.  When there’s no where else to go, no one else to turn to, all that’s left is the cross which will never fail you.  I wish I would have realized this before without having to go through these past years, but with my pride that I held up high I believe it was the only way to bring me to Christ.  I pray that those I love and meet can come to this relationship with The Lord without having to go through the suffering, that they can lay down their hurts, anger, pride, etc… and find true JOY this Christmas season and then continue all year round.  2 ways to this, through prayer and quiet time daily  (even if only for a few minutes) to try and find that closeness to God and to listen to what He is trying to say to you, and also to get in the Bible as often as you can.  These 2 things will reveal who God is and how much He loves you, and the transformation and joy that follows as  you continue to seek that relationship is amazing.  Merry Christmas to you all, thank you for reading, and I’ll post again in a few weeks!

2 weeks post surgery (RPAO and scope)

As usual I am a bit behind with my writing, I am 2 weeks and 3 days post surgery now.  Week 2 brought a decrease in surgical pain and use of pain meds, increasing energy, and increase in independence.  The more I move the more I see how stuck my pelvis is in a rotated position from the chronic muscle issues I’ve had for so many years as a result of the bilateral hip dysplasia/torn labrums/FAI/excessive hypermobility.  It’s frustrating because I don’t have the guarding pain from the muscles like pre-surgery (from having an unstable joint), the surgical pain is almost gone, but the muscles are just tight from chronically being in a guarded position (and very full of trigger points) and are keeping my sacrum rotated which keeping my pelvis out of alignment which hurts to sit, stand, walk, move, and even to lay (although this is the best position).  I see my myofascial PT this afternoon and hope that she can somehow help this mess.  After my last PAO she eventually got me unstuck with those muscles through women’s health therapy, but we had to wait so many weeks after healing to address it, so I hope I’m not too miserable until that time period.

I did leave the house twice (both of which left me pretty exhausted), once going to my local doctor to get my stitches from my scope out and get some blood work done, and a second time to get my aquatic PT evaluation so that I can start pool therapy next week.  My surgeon said I could just to go the local YMCA and walk in the water, but the water at our Y is cold (cold with hypermobility people like myself is very very bad, and often counterproductive to what I am trying to accomplish in the pool), and it’s just not set up good to get in/out of the water safely hopping on one leg.  I used the same therapy place as last time when I did pool therapy after the other leg had this surgery and the water was warm and I could go right up to the entrance with my wheelchair (I am too terrified to take my crutches there due to all of the water on the floor, I don’t want to take a chance at slipping and falling) park it and then use the bars on both sides of the steps to support me as I hop down the steps and into the pool where I will be at chest level for walking and simple exercises  (in order to maintain my weight bearing precautions).

I can get in/out of the shower, dressed (except for right sock and to tie right shoe), on/off bed and couch now, and go up/down the stairs fairly easy with my crutches now (although my husband and mom won’t let me get in/out of shower or go up/down stairs without supervision).  My mom has been here every day helping the kids get breakfast before school and then off to the bus, bringing me breakfast in bed (I still limit my stair usage to only going down once in mid-morning and up at nighttime) then making sure I get showered and dressed, cleaning, doing laundry, getting lunch, and some days cooking dinner.  She has made all of this so much easier then I expected.  I told her she can start to wean off her time here next week, just doing mornings to help with the kids so Yago  can start work on time, and getting my breakfast, making sure I am dressed and showered and supervising me to get downstairs.  By mid-morning she will be able to go hopefully and get back to her daily routine.  We’ve had some delicious dinners dropped off, and still have 5 frozen ones in the basement, so the help with food from mom and friends has been so wonderful.

I thought I would get a little stir crazy like last time, but honestly I was way more motivated to get out and do things when it was summer (my last PAO surgery) and way more content to stay in the house this time with the cold temps.  I hope to venture back to church next weekend with Yago and the kids, I don’t think I have the sitting tolerance (especially with a stuck pelvis which makes sitting pretty miserable) just yet.  We’ve turned down a few invitations to dinner, as I just don’t have it in me yet physically to go out and socialize or attend any events.  Looking back at my blog from the LPAO it took about a month before I was ready, which I am hoping will be the same again.

Sleep is the one thing that many nights is very hard.  I’ve been training myself to sleep on my back since my first surgeries 1.5 years ago.  I don’t do it all night long, but I have forced myself to start each night at least on my back with 2 pillows under my knees-ankles for 2-3 hours before I turn on my side.  It’s the best position to sleep in, especially for my neck issues, but it’s hard to tolerate longer than that time frame.  After this surgery it’s too painful to sleep on the side (even the non-operated side) for several weeks (I checked my blog and it took me over 4 weeks last time), so some nights I’m lucky and other’s I’m mentally tossing and turning feeling pretty exhausted and unable to get comfortable to sleep.

Mentally I am just ok.  I am getting frustrated with my pelvis being out of alignment which becomes more and more painful the more I move and become more active.  It’s different feeling than before and I want to fix it like NOW, but everyone says one step at a time and I need to be patient, and I know all of these things on a cognitive level, but emotionally I am just so sick of pain.  I broke down the other night recalling events of the past 4 years.  I know so much good has come out of my suffering (I’ve shared specifics in the past blog posts about it), but it’s still hard to walk this road, still hard to watch other mom with their kids doing “normal” things, still hard to have pain every day all day.  I’m only human, I can only handle so much and at times things have been so overwhelming.  Looking back I can see God in it all, but sometimes you just need a good cry about things.  Anyways, I’ll post again soon, as always thanks for reading.

Surgery, hospital stay, and week 1

My intention was to write this blog post while still in the hospital, but only having my phone to blog on was tough, plus every time I tried to start it my eyes would drift shut and I would drop the phone.  The exhaustion I felt and still feel is crazy.

We left for Columbus last Monday, November 17th and stopped about 1/2 way down to grab some dinner.  We had decided on Chipotle and each got a burrito.  Those are SO big, wow!  I ate most of it, shoving it in despite being full 1/2 way through because I  knew I would not be eating any food for almost 24 hours after that.  We slept in a hotel 5 minutes from the hospital.  I was a bit nervous, but stayed up so late that eventually I crashed from exhaustion.  We arrived at the hospital at 6am and went straight to pre-op.  What was different about this hospital was that each pre-op bed had it’s own room where your family could stay with you until they take you back to surgery. That was a huge benefit for Yago and myself.  I only stayed about 40 minutes before they wheeled me to the OR. I met all the staff there before they put me under.

I woke up about 4 hours later in post op which had the same type of individual rooms as pre-op did, and Yago was able to come in with me about 10 minutes after I woke up.  We didn’t stay there too long, as I was pretty stable (with just my usual low blood pressure).

Dr. Elllis talked with Yago while I was still out, then came to talk to me in my room later that day.  He said my labrum was not re-torn, that I had some cartilage damage, but not enough to call it arthritis, that he was able to break the pelvic bones and make the socket in a good position, and that he tightened my hip capsule by stitching it multiple times.

Like last PAO I had pretty low blood pressure.  When PT came to get me up Wednesday morning, within 1-2 minutes of standing at the edge of the bed I felt the blackness surrounding my head like I was fainting so we sat me down quickly.  We took my blood pressure sitting and it was low 100’s over 60’s which isn’t bad for me.  We tried standing me again and it went down to 80/50 which is pretty low.  We also had lab blood work drawn on me and I was in the 8’s for hemoglobin (normal for women is 12.2-15.5), so being that I was so low and symptomatic I ended up receiving a blood transfusion that afternoon (of my own blood which I had previously donated).  After the blood transfusion I went up to 10.2 which helped.  That night however we had some stress start.  I realized that my IV (which had been placed in the back of my right hand) was no longer flowing.  The whole hand and arm was starting to swell and the IV site hurt really bad.  My nurse came and tried to start at a new spot, but after 3 attempts at sticking and digging around she couldn’t get a new IV in.  She called in the Nurse Manager who everyone calls for the “hard” IV people (which is not usually me, I have great veins, but we realized after losing a large amount of blood in surgery that I was now dehydrated and my veins had shriveled up).  He did several attempts as well, but could not get an IV in.  He called one of the charge Nurses he works with who is good at IV’s too, and he could not get one in.  I had been off fluids for 2 hours at this point, poked 7 times and still no result.  Finally I told them just to put the smaller needle in (which can be used for IV fluid’s, but not for blood transfusions-which it had been determined that evening that I was going to have a second one in the morning) to hydrate me and we could work on the bigger needle in the morning.  Finally the 2 male head nurse’s who were working together got the small needle in….8th times a charm I guess.  Meanwhile they had “blown” several veins and my arms are full of bruises still today from that night.

Anyways, the next morning (Thursday) we tried and were able to get the bigger IV in and I received the other bag of pre-donated blood.  I also got out my epidural (in which the pain got a lot worse) and the catheter.  I got up with PT and was able to walk some in the room.  Friday I was able to get rid of the drain bag that was hooked up inside the surgical site draining excess blood out.  I got up again 2 times with PT that day and walked partly down the hall and also did some stairs.  I was using the walker some and started practicing with my mobileg crutches too (since I was determined not to have to use the walker at home since it gave me such bad carpal tunnel last time).  Overall the hospital stay was good with the exception of 1 nurse who consistently gave me my meds late despite me telling her over and over again.  Yago stayed with me the whole time, and had his own sleeper/pull out couch in the private room with me.  On Friday my IV stopped working again, and the nurse had to poke me now my 10th time to put a new one in.  It was very frustrating!!

During my hospital stay I did very little.  Slept a lot, we watched a couple of movies on Netflix (although each movie we had to watch over the course of 2 days because I could not focus on anything too long).  I spent time on social media and texting a bit too.  I didn’t try and read this time, as I learned the previous PAO that there was no focus for reading.  Even as I sit here typing I am fighting my eyes to keep them open.

Saturday afternoon I was discharged and we arrived home around 5pm.  I’ve been taking it easy here at home, staying in bed most of the day, going downtairs only for a couple of hours at dinnertime.  My mom has been here helping a lot with both the kids and myself.  I am strictly using the crutches only, I am just pretty slow on them.  My pain fluctuates between tolerable (when I am laying still and not moving) to really  bad and intense (when trying to move in any direction).  I am taking the pain meds around the clock, and am extremely tired.  The past 2 days I wake up, eat breakfast, hang out in bed a little, get showered and dressed (with my mom’s help) and then am so exhausted I climb back into bed and take a 2-3 hour nap.  By bedtime 10:30 I am conked out and sleep until 7:30-8 when I hear the kids out in the hallway.

Pain wise I feel like someone is stabbing a knife into the back of my SI joint on the right side, and also I have a deep/sore/stabbing pain in the front of the hip socket too.  They seem to go together, as when 1 gets worse, the other one follows.  I will say though that my pain is a bit less and I can do more than the first time around with my left PAO surgery.  Everyone is surprised how much better I am doing and look this early out.  Now if I could just get rid of this stabbing SI joint pain I’d be really happy:)

I think that about sums up the first week.  I’m so glad it’s over and that hopefully this will be my last major hip surgery for a very very long time.  I’ll try and update weekly about any gains I make and things I learn.  Going through this the second time was easier in some ways, but harder in other ways (mainly mentally).  Thank you to all those who prayed for me, I really felt that God heard them and answered them, I felt very loved, very covered in prayer, and really blessed going into this.  Thank you again for reading!

4 days until surgery

I didn’t realize it has been well over a month since my last post.  I’ve been through a myriad of thoughts and emotions during this time period.  I am 4 days away from the RPAO and hip scope surgery.  I’ve been waiting many months for this which has taught me even more about patience and has given me a lot of time to reflect on the past 4 years, as well as my whole life in general, but I’ll get to my reflections in a bit.

Physically I have went downhill these last weeks.  I still never fully recovered from the hip move Dr Ellis did July 31 (the one that left me realizing without a doubt that I needed this surgery).  I started using the cane outside of my house about a month after that visit and have continued to since then, and this week have even pulled out my Mobileg crutches when having to do long distances (ex. going through Toys R Us Christmas shopping).  My hip instability has just slowly gotten worse and worse over these last weeks.  It probably didn’t help that I have been a shopping, decorating, and cooking maniac trying get everything ready for Christmas and my daughter’s birthday (which is 3 days before Christmas) as well as for surgery.  I have prepared and frozen 8 large meals so I’m hoping that will help my hubby out some.  Last surgery his parents came and lived with us for 7 weeks which was awesome!  They did everything for us and took care of the kids, he just had to work, grocery shop, and take care of me.  This time although they will not be here my kids are 1.5 years older and in school (although they have 6 days off at Thanksgiving and 2 weeks at Christmastime, yikes!) at 6 and almost 8 years old so thankfully they will be easier and more independent than last time.  These kids have been so good going with the flow and learning to be independent with things so much earlier than most kids their ages.  We will also have my mom several hours a day (before and after school to help out with the kids and some cooking), but I know that things will be different and the stress level will be pretty high.   I think I mentioned before that we are hosting a high school exchange student this year as well.  We committed to this last winter before we knew for sure this PAO would be necessary so that’s a little more added stress as well as things are not going quite as expected with that.  Anyways, I have done all I possibly can to get things ready around here, and am unfortunately paying the price for it physically.  I was using my SI belt to try and hold my hip better in the socket, and it did help for awhile, but this past week it started making things worse instead of better, so I stopped using it again.

I have been doing my 3-4 basic glute PT exercises at least every other day, as well as a couple of planks and some basic upper body stuff with my bands to try and keep my core and upper back from getting too weak while waiting on surgery.  It’s not enough though, as I can feel myself getting weaker, but if I try and add anything else in my routine it just flares my hip up even more.  I’ve also continued to get myofascial PT every 2 weeks to try and give myself a little relief (which is lasting less and less days again, kind of like before every surgery I’ve had).

This weekend we are going to a concert tomorrow night with my daughter and friends (her first concert-we are going to see TobyMac who she really likes so we are all very excited) and church, but other than those things I’m just laying low and trying not to flare myself up too much.  I plan to use crutches at the concert as not to put too much pressure walking, but I know I will flare some from standing and attempting to “dance” while enjoying the music.  Monday night we head to Columbus, then Tuesday morning I head into the hospital.  My anticipated discharge will be Friday, but last time I stayed an extra day due to very low blood pressure so I’m thinking it will either be Friday or Saturday to come home.  I have all the equipment from all of my other surgeries, so I just have to bring it all up from the basement and we should be good to go.  My parents are coming to stay with the kids next week, so praying for patience for everyone here at the house.

People keep asking me how I feel about the upcoming surgery.  I have mixed emotions on it.  I’m ready to be on the other side of it because I am so sick of the pain I’ve lived with so long, that seems to be getting worse these last weeks, but I also know what to expect afterwards and remember how bad it was to have a broken pelvis and be so dependent on everyone for everything (even getting up/down out of bed/off of couch).  I know it needs to be done, I’ve seen the positive results from my LPAO 1.5 years ago, but I also know it took a good 3-4 months to feel not too bad, and a good year+ to feel “ok” in that hip.  I will say that honestly I am looking forward to being under general anesthesia to be completely pain free for those hours (projected surgery time is 5-6 hours).  Call me crazy I know:)

It’s been over a year since my right hip scope that we can now officially say failed.  I think in this journey of 4 years I’ve grown and learned the most in the past year, particularly in the last 7 months.  Most days I’ve learned to relinquish control and fully trust God.  Some days I backslide, but instead of breaking down crying and being a mess, I put on some loud worship music and praise God or spend time just talking to him and praying my way through the days.  I’ve spent countless hours doing this on days when I am doing things and when I have  quiet/reflective time.  I always end up in a lighter and much more positive mood after this. I spend a lot of time alone which would have driven me crazy in the past, but I actually like the alone time I’m spending with God now.

I feel like such a different person now than I used to be, a much better person in so many ways.  Trying to live a life for God vs. living life for myself has made me a much more peaceful person.  Where doubts, fear, and anxiety ruled my thoughts much of the time before, when those try and come in I turn to the Lord who releases those things from me.  I realize now that had my scope been successful, had I been healed and well within the 6-12 months that people normally recover and move on I would not have grown this close to God, would not have gone through so many of the changes I have gone through, and I would not be the person I am today (which is sooooo much better than the person I used to be).  My marriage is stronger, my husband has grown closer to the Lord and in his faith, our priorities are very different than they were before, and we now have a clearer vision of how we want to raise our kids in these times of change in the world.  When people say to me “you’ve been through so much” I agree that I have, but it’s not in vain, not without purpose.  Romans 8:28 “And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.”  So even though I wouldn’t have chosen this road for myself, He has chosen it for me, and it has worked for good in many ways, and even though I get weary and down on this journey at times, I wouldn’t change it or take it back because SO much good has come out of it.  He knows better than I what I need and what is best, His plans sometimes are so much bigger than what we can see.  I just need to keep trusting Him and keeping my faith in Him and His plans.  God knew/knows what I need(ed) in order to change into the person who he intended me to be, and I am open to letting him continue to changing me and preparing me for what he has for me to do in this life, and also for what lies ahead beyond this life.  I’ve come to an  abandonment of my plans in order to follow his plans for me.

Deep stuff for a Friday night, but I felt it was necessary to share, especially to those who are struggling in their own lives and feel hopeless in their situations.  I’ve been there, I’ve been through the storm, I’ve been through deep depression, I’ve been hopeless and have felt like giving up, like dying to get out of the awful pain, but turning to God who has shown his faithfulness over and over again and has given me the strength to get up and keep going even on the hardest days and He has rewarded me not with a quick healing, not with a fixed body, not even with a pain-free day, but with love, hope, patience, endurance, and a new sense of peace deep in my soul.  I wish all my friends and family could experience this, which is why I am sharing  this tonight.

So the next time I blog I will be on the other side of this surgery, probably on heavy narcotics (so the post may be a little loony so please forgive me ahead of time).  I’m hoping everything goes smooth, but it’s all in God’s hands.  I ask if you are a praying person (which I’m assuming if you are still reading at this point you probably are) to say a prayer for me on Tuesday morning, that there will be no surprises, that surgery goes smoothly, that pain is controlled well, and I have been praying for supernatural healing (which I know Is possible with God).  Thank you for reading as always, signing off with Love to all who read this, hoping that the Lord too can touch your life the way he has touched mine.

8 weeks to go and reflecting on surgery, pain, joy, and God

I am now just under 8 weeks and counting down for my right hip  combined PAO/scope surgery. I have very mixed emotions regarding this.  Part of me wants it today, wants to get it over with and be on the other side of it and not have to hear the word surgery (hopefully anyways) for many more years. I would be lying to say I have no fear of it, although this time the fears are a bit different since I know what to expect.  I still have fear of being under anesthesia and being cut open and having my pelvis broken and all that stuff, but the other part of me still remembers back to how bad it really was in those days/weeks/months after my left PAO in May/June 2013.  I’m not sure if it’s fear as much as weariness at knowing what to expect and for how long.  I remember being in the hospital in the days after the surgery and having pain so bad when I moved that it literally brought tears to my eyes (pain like I had never felt before despite 2 natural births, stitches, and having a hip scope only a month before the PAO), it felt like someone had taken a knife and was shoving it as hard as they could into the back of my hip (and this was on maximal doses of Percocet and Tramadol combined), and at certain times when the pain was intolerable allowing them to give me an injection of the really really strong stuff.  I remember being so dizzy and lightheaded from having a BP of 80/40’s that I could barely sit up and could hardly keep my eyes open.  I remember the first time they had me hop with the walker, it was like maybe 10 feet but my heart was pounding, I was sweating profusely, and I felt like I was going to either throw up or pass out.  I remember the helpless feelings after going home of wanting to re-position myself and being unable to, of waking my husband up at night every night several times a night to either use the bathroom or re-position me.  I remember crying many days because I had no one to talk to, no one who understood what I felt physically and mentally, and felt so alone laying there all day long by myself just waiting to heal.  The few outings in I had in the wheelchair where people avoid eye contact or give you odd looks.  Then after healing starts, the whole PT regimen of getting tight muscles to calm and weak inhibited muscles to wake up and fire.  That lasts several months.  It took a good year for that left hip to feel like things were not too bad with it.  I just feel like it’s going to be a continued long battle this next year.  I’ve been praying for endurance for it all, and I know God will give it to me, because on my own some days I’m so over it all,  so it’s only with His help that will allow me to get through it all again.

So, I talked with my PT at OSU Monday and he said it wasn’t necessary for me to come anymore.  I haven’t gotten any better and there’s nothing he can give me that will prepare me anymore for surgery then he already has.  He told me to email or call him with any questions I may have the next couple of months, and that I don’t need him before surgery at all, to email him right after and let him know how it goes.  He said he would happily keep me as his patient if I was willing to make the trek regularly to Columbus to see him.  I know that it sounds crazy, but I am thinking I will travel those 2 hours each way once a week to see him once I start weight bearing in January.  I just cannot have bad PT again like I have after the last 3 hip surgeries.  I don’t want set back after set back and more pain and delayed healing and function.  It’s not an ideal situation I know, but at this point I need someone who knows what the heck they are doing over an ideal situation.  I’ll pray on it the next few months and if that still continues to be what’s in my heart I will go with that plan.

Anyways,  I know I will get through this next surgery and whatever comes along with it,  I know God will give me strength and endurance as I’ve seen his faithfulness over and over again these past years not just in my own life, but also in others around me as he’s opened my eyes to so much.   It doesn’t mean I don’t have the fears, I still get them and I still get weary mentally, but that’s when I start praying and give it to God, sometimes over and over again, sometimes many times a day.  I spend lots of time in prayer throughout the days now, not just for myself and my situation, but for those I care for, and for the whole mess of the world and everything going on in it.  I’m also reading through Psalms and am finding the passages very calming and soothing.  As long as I keep my focus upward with prayer, music, and scripture the many circumstances around me are no longer overwhelming.  It’s such a relief to have this feeling that when I see lots of chaos and unknowns around me to know that it’s ok to not know how everything is going to work out, to know I don’t need to try and “fix”  everything around me.  It’s comforting to know that I don’t have to try and control it all, but the Lord is in complete control of all and I don’t need to worry.  Even on the days where I do struggle mentally with things, I still have this joy deep inside my heart, inside my soul, a peaceful joy that is unexplainable.  Sometimes I am in awe and wonder of it.  Here I am in what has been the hardest years of my life, out of work, in chronic pain, failed surgery, unable to exercise or do anything active with my husband or kids, and yet for the first time in my life I have peace and joy and contentment in my soul.  I think back to 4 years ago where I sat like I do today in my living room on the couch looking outside at the beautiful leaves changing colors in my new house (new to us at the time), with my new job that I loved, with no pain, physically in the best shape of my life with everything in my life just as I pictured it and at the moment I felt happy.  Notice I didn’t say joy, but happy.  Happiness is a feeling of pleasure which is temporary and based external factors.  Was I joyful then….absolutely not, I was happy……for the moment anyways.  I was quick to anger, quick to pass judgment, quick to turn my back on something if it didn’t benefit me in someway/somehow, quick to bring a negative thought to a conversation, and living with a big proud head on my shoulders.  Well, that happiness didn’t last very long, when things fell apart and no longer went MY way I sunk into such a deep depression for a long long time.  It was in those dark moments that I realized more than ever how much I needed God.  I prayed for him to change my circumstances, to take away the “storm,” but what he did instead was change me instead of my circumstances over the course of the past 3 years, and He calmed me amid my “storm” instead of taking it away, and offered me for the first time in my life pure and simple joy that comes with a life of following Him and trusting in Him (aka-having faith).  No one wants to go through suffering, but through it the Lord has changed me and offered me a life maybe not of great worldly “happiness,” but one of peace and joy in my soul that is worth more than a thousand “happy” days on this earth.  Thanks for reading, I’ll update when I get closer to surgery, but today just really felt called to share on here that through suffering the Lord can give us joy and a new purpose in life if only we open our hearts to Him and let Him in to change us in whatever ways He wants to, and to simply as my dear friend Johnna once said “let go and let God.”

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

 

My experience with scoping a very mildly dysplastic hip while having hypermobility

I don’t usually post on my blog twice in a week, but decided I wanted to write a post specifically for the PAO group on Facebook.  This group has been a wealth of information for me the last few years and I notice a topic that comes up frequently and thought I would write about my own experience with it—mild/borderline hip dysplasia with impingement and torn labrum, how it presented/is presenting and considerations to think of when trying to decide what surgery is best for it: scope vs PAO.  I realize everyone’s bodies are different and that symptoms and severity vary between all of us with dysplasia, but there are often communalities (even in those of us that don’t present as a “typical” hip dysplasia patient), so I am simply sharing my experience hoping to help someone who is in the same shoes I was last year.

On my left hip I had a scope April 2013 then a PAO on it in May 2013.  Once my surgeon was in with the scope and saw the hypertrophic labrum and where the wearing of my cartilage was taking place, he said that my hip presented more dysplastically (it had a CE angle of 22 with some acetabular retroversion and 27 degrees of femoral anteversion) then it did like an impingement.  Being almost 16 months post op on that hip it’s not perfect, but it is way better than it was and I have absolutely no regrets with the decision for the PAO on that hip.

When it was time last fall to decide on the future of my right hip (CE angle 24 with same version measurements as the left) my surgeon really thought I could get away with just a scope because the dysplasia was so mild.  My symptoms on the right were somewhat different then the left, so we really thought the impingement was the main problem.  I was scoped on that hip October 2013.  It had a bit more damage to the cartilage than the left did, and although the labrum was bigger than a normal hip, it wasn’t as large as the left had been.  Where the cartilage damage was had been more typical of that of a person with FAI, so my surgeon after the scope again told me he did not think I needed the PAO, and that being it was such a big surgery with a lot more risk he didn’t want to perform it on me unless absolutely necessary.  He did say that my recovery would probably take a longer time than most being that I am very hypermobile (likely have EDS, but haven’t pursued the official diagnosis).

From early on I was miserable, I knew I had a lot of things against me (EDS, weakness-I was on crutches for that hip for 5 weeks leading up to surgery because of the pain-, age-I was 34 at the time, and of course having very mild dysplasia still).  Everything I did in PT flared me after the first 3-4 weeks; I could not progress past very basic isometric hip exercises without flaring bad.   The bike even flared me and I did very little of it in my recovery.  My ROM was of course wonderful and within the normal range within weeks (thanks to lovely EDS) but I could not gain strength or get rid of the terrible pain in the back of the hip joint and all the muscles around my right hip and even the whole pelvis at times.  My PT kept pushing me through more difficult exercises talking about how I was “behind” in my recovery.  I started to hate PT because of how awful it would make me feel for days at a time.  At 4 months I saw my surgeon and said I thought the scope failed because I was maybe 10% better than pre-surgery.  He said to wait more time, and we couldn’t call failure until closer to 9 months.  We agreed my PT was doing me more harm than good (and this is the 3rd hip PT I had—a different one after each surgery since they were not good and always made me worse) and I quit PT.  I had been getting ART at the time for pain relief from all the flares PT caused, and his personal trainer who worked there said he would work with me for free doing the FMS training and going very very slowly.  As the weeks went by I still had pain everyday all day, but was able to gain some muscle and core strength, so the pain decreased bit to a tolerable level on many days, I had minimal flares, and instead of muscle pain all over I was developing more and more pain deep in the back of the butt/hip socket area.  At month 7 I started traveling 2 hours away to see my surgeon’s best PT guy who had tons of experience working specifically with my surgeon’s post op patients.  I started seeing him every 3 weeks.  He had me start back at very simple isometric glute type exercises.  I had a hip injection around this time also, and although the muscle pain did not go away (muscle pain in psoas, low back, hip rotators, glutes and IT band) that deep aching and sometimes burning pain in the back of the hip/butt went away for a few hours.  My PT started saying that was more a sign of joint dysfunction then just “chronic” muscle issues.  I kept up with the simple PT exercises and my pain decreased more, I was actually doing things like going to the park with my kids and pushing them on swings, staying on my feet for up to 30 minutes with only minor pain.  My PT didn’t want me to progress with exercises until I could do all 5 every day and get through my whole day with little to no pain for at least a week.  I started to get excited that maybe it really was a muscle issue from my PT pushing me too hard too soon over the winter time.  That feeling that I was getting better lasted less than a week before I went backwards.  This summer has been filled with ok/tolerable pain days for a day or so, followed by a bunch of really bad days, followed by mid-level pain days.  When I saw my surgeon July 31st and we talked and he moved my hip around and saw that my crazy ROM I still have and all the pain I still have and finally said that it didn’t appear the scope worked.  According to his PT my strength in ALL of my hip muscles improved greatly, but the pain level only improved minimally.  That too apparently is a sign of dysfunction.  As I was talking to my surgeon that day thinking I was a bit better he asked me what percentage of my pre-hip life I was living, and I honestly told him maybe 30%.  That pretty much summed up the decision to have a PAO on the right hip too.

Anyways, on the PAO group we always want to know symptoms so I am going to write my symptoms pre and post scope hoping maybe it helps someone in their decision making process when faced with the option of scope vs PAO with mild dysplasia.  Pre-scope on the right I had pain deep in the butt, some groin pain although not terrible unless I was pivoting on my right hip then I got this sharp, deep catching pain in the groin (this was from the torn labrum).  Muscles all around my right hip were constantly going into spasm, as well as my back muscles, and even at times all of the way up the neck.  Sitting hurt, standing hurt, walking hurt.  Laying down I still had pain but it was much better than any other position.  Post scope as I am at almost 11 months out on this right hip, I still have the deep butt pain and it will burn in there if I do too much (which I’m chalking up to inflammation because it usually happens later in the day and I know it’s not nerve pain because I’ve had a ton of that due to my EDS and lumbar instability and pelvic instability) and the muscles around my right hip and low back fatigue and develop trigger points everyday very quickly.  I wouldn’t say they are in spasm (unless I go crazy and try to do too much causing a spasm) but they get very tight quickly and hurt/ache/burn a lot of the time.  I also can feel the femoral head is not situated up inside of the socket the way it’s supposed to be.  It feels like it is lateral and sitting too far back.  It’s hard to imagine I suppose, but after my LPAO within a couple months I could feel my hip was in a good position inside of the socket.  On this hip I have never felt that, and as time has gone by this past year I’ve felt it settle even more to the side and back.  Day by day my symptoms are becoming more and more reminiscent of the how my left hip was before the PAO. My whole body responds to the tightness around my right hip, my sacrum twists, lumbar spine gets pulled on, sometimes I have nerve pain, and my right foot collapses into pronation.  I can use my muscles to pull it back up in the socket and hold it in place, but immediately the muscles feel overworked and spasm if I try to hold that position to walk or weight bear.  If I walk more than 5-10 minutes I also develop that deep joint pain in the butt and it hurts to weight bear.  I also feel much better when laying on my right side, which seems to help push and support the hip in the socket.  When I lay on my left side it feels like the femoral head shifts around and the muscles respond badly in that situation.  Well, I hope if you read this it can help you with your surgical decisions.  It would have been great to go right to a PAO and skip this past year of misery, but I’m not dwelling on it, I just hope to help someone else in the same situation.  My surgeon did say that he really believes that if I did not have hypermobility I would have done ok with the scope, but having lax ligaments and borderline measurements is like a double whammy and set me up for failure.  Live and learn then move on:)  Thanks for reading!