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

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

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

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

Surviving the summer and deciding whether to have screws removed

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

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

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

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

Romans 5:3-4 says “We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance.  And endurance develops strength of character, and character strengthens our confident hope of salvation.”

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

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

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

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

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

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

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

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

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

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

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

5 months post RPAO/scope

I have been meaning to blog for a while now and never got around to it, and I realize it’s been 2 months since I have posted.  I would love to post that things are awesome, but the reality is they are not, but they are slowly (like a snail pace slowly) getting better, so I am trying to stay positive.  I constantly have to ask myself “am I better than before this last surgery” -Yes, “am I better than I was 3 months ago” -Yes, “am I better than I was 3 weeks ago”-I guess so most days, “am I better than last week”-hmmmm that one depends on the day.  If you asked me the past 2 days I would have said definitely, I even went as far to say I turned “the corner” a couple days ago; however today I would say the corner is still in front of me and I’m not really better than last week.  This journey is definitely not a straight line forward for me, it’s constantly one step forward followed by 3 back.  A year ago I gave up my control to the Lord on this whole getting out of chronic pain thing, but I realized as the days went by I can’t just give it to Him once and life moves on all pretty and nice, but I need to give it up to Him  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