Likely heading towards another PAO

It’s been over a month since I’ve written and we’ve been pretty busy here.  My kiddo’s finished up school (my daughter 1st grade and my son Pre-K), we had my sister in from California visiting for 2.5 weeks, 2 dance recitals from my daughter, followed up by our 2 week trip to Guatemala to see Yago’s family.  We just got back almost a week ago.  As I’ve written before I was VERY nervous and scared about traveling with the constant pain in my right hip and all the flares that I get.  I prayed for weeks leading up to the trip for God to allow me to not be too miserable during the trip from the travel.  The trip consisted of us waking at 2:30 in the morning, leaving the house at 3:30 in the morning for a 1 hour drive to the airport (my wonderful dad drove us and dropped us off), a 2:30  minute flight to Houston, 1.5 hour layover, then a 2:30 flight to Guatemala City.  Then going through customs, baggage claim and checks, and finally heading outside to meet up with my in-laws at 11:30 local time (they are 2 hours behind us in time).  I swore I wouldn’t nap (because I never am able), but after a bite to eat and time icing my hip flexors I laid down and didn’t wake up for 2 hours–that NEVER happens but obviously I soooooo needed it!  I was flared up some for the next day or two, but not as bad as I expected to be. I used my cane for all outings that involved more then just going into someone’s house to visit/eat and that helped me a lot.

While in Guate we had something each day, sometimes it was just a meal at someone’s house, other times it was a stroll around a mall/shopping area for lunch/ice cream, and the hardest was when myself, mother-in-law, 12 year old niece, and my 2 kids went to a small amusement park.  I was freaked out knowing I had to walk more then usual, but it turned out the park was pretty crowded so I hung with the girls so I could sit and rest while they were in line for the rides (because with my son only being 5 I didn’t want him to wait alone in line for the little kiddie rides so my mother in law hung out and stood with him).  With the use of my cane in my left hand, and my right hand I used to stabilize my hip on the side, I was able to walk and not be too miserable.  We were there 5 hours (but as I mentioned I would walk then sit for 20-25 minutes waiting then repeat same thing again) and I couldn’t believe it.  We spent both weekends at the beach.  The first was just 2 days with my husband’s friends and my hip bothered me, but I was able to get through it.  The second weekend was for 4 days with his parents, sister’s and their families and incredibly I had very little pain within hours of arriving.  I was in/out of the pool all day each day with the kids and at least once a day when the tide was low enough I was on the beach in the waves with the kids.  My hip would get tired and let me know, so I would rest a few minutes, then get in the pool and it would feel better.  I had a little pain at back of the joint and a little tightness in the front of the hip, but it was the least amount of pain I have had in 3 years!!  Within hours of arriving back in Guatemala City after the 4 days at the beach the regular pain started to come back.  I have no idea what happened that weekend at the beach but I am considering it a gift from God. The trip back home was basically a repeat of the trip to Guate, but I flared a lot worse with all the sitting.  I did use a wheelchair and the electric carts to get around the airports because it was just way to much walking for this right hip.  The flare and pain from the trip didn’t stop within 2 days like when we went to Guate.  My hubby and I were talking and he thought it might be because I was “distracted” and busy more on the trip but I truly believe The Lord answered my prayers that I prayed so diligently for so many weeks.  I am truly so grateful to him that I made it through the trip without being completely miserable!!

So I went back to OSU today to see my PT there (last time I saw him was June 8th where he re-assessed me and told me that my glute max and hamstrings had gotten stronger, but my hip rotators and glute med and min were still weak).  Over my trip I had done 4/6 of the hip exercises that he had given me on a daily basis (except for the travel days).  The 2 I stopped doing were ones that seemed to agitate my muscles enough to make me miserable for the next several hours, so I stopped doing them.  Today he re-tested everything again (flexors/abductors/rotators/adductors-basically everything possible around the hip) and was surprised to see that all of my muscles tested really well.  He said because the muscles were so strong now I shouldn’t be having pain.  Well I do, it fluctuates from groin pain deep in that area to low back pain to pain at the back of the hip joint, sometimes it’s worse in 1 area, other times all of those areas hurt, but one thing constant is that I am NEVER without pain around that hip.  He then had me do some standing/balancing tests and watched me walk and said that my right hip still drops some (but not as bad as it did) when I walk, and that my balance is still not good on the right leg, and that I compensate still with shifting my trunk and/or my knee turning in to keep myself balanced. We had a looooooong talk after that about what he saw and assessed and his theory (although it could be wrong he warned me) is that as strong as my muscles are testing I should be able to do those standing things and walk community distances without pain, since I have pain it likely points to a joint problem.  He threw out there that because of my very borderline dysplasia paired with the hypermobility of my ligaments that the scope may not have been enough to stabilize my hip capsule and there could be some instability in the capsule that any amount of strengthening in the world could not fix.  He said I could try and keep strengthening it the next 6 months and see what happens but his gut feeling from my muscular improvements not helping the pain is that I need the PAO on this right hip too.  Without the PAO there is a good chance that theI will have muscle problems for many years, if not forever. He gave me a couple more exercises to do that are still “basic” but a little more advanced then what I was doing before.  He said I may flare some with them, and if I do then to take a rest for a day and try again.  If I continue to flare with them then I should stop doing them and email him.  So I go back and see him July 31st, then he will run into the next office and talk to Dr. Ellis, then I go see Dr. Ellis and we make a plan. 

I have been anxious a lot since returning from the trip, worried about the future and at night going over in my head all the assessments I’ve had from my PT as well as my own on a daily basis.  Then as I was trying to catch up on my daily devotionals last night Proverbs 3:5 was in one of them and it says “Trust in the Lord with all your heart and do not lean on your own understanding.”  I needed a reminder of that last night because I keep trying to figure things out on my own and instead of worrying I just need to know that God as “got this” and I need to stop stressing over it and let it play out as it’s meant to play out.  I need to let go of the worry, let go of trying to figure things out, let go of the control (I know I’ve talked about this in many of my posts, but I still struggle with it frequently).  I hate but need to resign to the fact that I cannot plan basically anything the next 6 months, that I’m back in this “waiting” period, that I am unable to return to work and have no idea when I will be able to return.  My goal is to focus on doing my best each day to try and enjoy this summer, enjoy my kids, and to relax and not stress.  I know however this all plays out is God’s plan for me, is what’s meant to be, and that there’s already been so much purpose I’ve found in this journey, and that fact that I’m still on it means the Lord’s not done using this for his glory somehow, someway quite yet.

One more thing I forgot to mention.  I ended up cancelling the geneticist appt I had for next week.  With the uncertainty of needing likely another surgery for the hips I 1.) didn’t want to have more expensive tests done that are not absolutely needed, as the surgery and all it’s costs will once again be a pretty penny and 2.) an EDS diagnosis sometimes doesn’t fare well with getting surgeries and things covered by insurance so I decided for now it’s not important.  Well, it’s getting late and I need to try and get some better sleep tonight!  As always thanks for reading!! 

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3 thoughts on “Likely heading towards another PAO

  1. I struggle with turning things over to God too Julie. I try hard to do this but always want to control “my fate” myself. It always works much better when I have faith that it is in his hands. I am glad that you had a good trip. I am sure that this was an answer to your prayers and a reminder that He s in control.

    Blessings,
    Darryl

    • Thank you Darryl, The Lord is so good and when I look back and reflect how he has been there for me at various times I’m always amazed even though I shouldn’t be, crazy huh:) we missed you guys and look forward to seeing you this weekend.

  2. I’m glad you were able to have some fun on the trip 🙂 I’ve done a few trips over the past few years with hip problems, and I’m glad I did even though it was painful. I remember the happy times, not the pain.

    I’m not sure if you know who I am XD I don’t want to give out my name on this account. But I’m the one who had to see like 10 doctors last year and had an open SDD with Dr. Sink in Feb where he didn’t do the FO, lol.

    I nominated you for the, “One Lovely Blog Award.” No pressure to accept it or pass it along, but I love your blog so I wanted to give you the award :3 15 people is a lot, so you can nominate as many or few as you want. http://thepaperbutterfly.wordpress.com/2014/07/21/blogger-awards/

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