It’s been 15 months since I’ve updated this blog. Many times in my head I’ve thought about doing it, but then I put it off because either I didn’t have the time when I was thinking about it, or I didn’t want to deal with the emotions that come with revisiting and re-processing my hip issues and years of chronic pain, dysfunction, surgeries, and recoveries. The truth is, when I learned my surgeon dropped my insurance at my last visit in February 2016 I thought that was a sign from God that that door was closed, that chapter of my life was closed and it was time to turn the page and I didn’t want to look back for awhile, but just to move forward and accept what was.
I continued after February doing my own physical therapy for a couple of months at home, but then for the first time in years the exercises I was doing started getting too easy for me, I couldn’t believe it. I emailed my PT in Columbus to ask what to do next, but he never replied so I realized that chapter had closed too, and I nervously headed back to the gym in April 2016, and very very slowly with much trial and error started to add onto my PT exercises. I started on the elliptical, only 3-4 minutes the first day with some light PT exercises, and added a little bit at a time. Oh there were times when I had flares, when I did too much but didn’t realize it until it was too late. They lasted usually a 1-3 days, one time a miserable 3 week flare (where I started to get scared I did long term damage but didn’t thankfully), and some other times they would last a week or so. I came to realize early on that I could only exercise two times a week and had to have at least 2 days in between. When you have a brain that wants to push, but a body that doesn’t let you it can really mess with your head, so I really had to continue to give my desires vs my reality to the Lord over and over again in this area.
During this time, around March of 2016 I was at a family event at church when one of my friends and leader of our prayer ministry team (which I am part of) told me that she thought I was supposed to go on this mission trip to Peru with the team that June and asked me to pray about it. I knew about the trip already, and deep inside really wanted to go, but didn’t see how physically it would be possible. At this point I really wasn’t walking even community distances, much less through whole airports and not to mention whatever we would be doing activity-wise in Peru. I also could not sit for more than a couple of hours at most (and that was with pain), so traveling to South America just didn’t seem realistic. I did go home and pray about it though and talked to my husband (who knew my limitations more than anyone else) and he said it was too risky and not a good idea. A variety of things happened over the next month and my husband and I were at odds with it still one Friday afternoon and I had to give a final decision so the trip tickets could be purchased by that coming Tuesday at the latest. I decided to fast and pray intentionally the next 24 hours (this was something new for me, as I love food and had never fasted, but felt like God was telling me that I should). Saturday I had a lot of alone time and poured out all of my fears about the trip to the Lord and I heard him speak to me and tell me that I was going to be alright if I went, that he would take care of me. I also laid down my agenda and prayed that if I was really supposed to go then God had to change my husband’s mind, because I was not going to fight him on this, and if his mind did not change then I would not go and wasn’t meant to, and I would be ok with that. I felt a peace in my soul after that day. Sunday night my husband approached me and I said that I wanted him to talk first and I would do what he thought was best. He then told me that if I felt that I was supposed to go, that he would support me in that decision. It was a pretty amazing moment, but not half as amazing as what happened in Peru.
So June came and 4 of us went to Lima, Peru. It was 17 hours of travel and 3 flights, needless to say a loooooooong day. I was hurting bad when we got there. The next day we rested and then on Sunday at the house church meeting some of the church leaders prayed over me and my pain decreased some which was a nice break from what I was experiencing after the long trip. A few days later when I was back at my baseline of pain we went to a shanty town and did a prayer walk through the town which is located on a large hill. We walked up/down and all around praying for the ministry the church has started there and for the people of the impoverished town. Right around the 3 hour mark my right hip was done. The muscles in the leg spasmed up, I had burning pain in my right hip, I was limping pretty bad, and my low back was starting to spasm up too. I was informed that we were finished and I limped my way down the mountain just trying to get through until we could catch a ride back to the house we were staying at to rest. We decided to pray at the bottom of the hill before leaving and my friend, our leader, asked one of the missionaries to pray for me. As he was praying for me, he placed his hand on my head and I suddenly felt this strong heat come into my right hip and leg where it was all spasmed. When he ended the prayer and removed his hand from my head the muscles were fully relaxed, all of the horrible pain I had been having was gone–just like that. He asked me to lift my right knee up in the air, something I rarely did because over a 40 degree angle I would get a sharp pinch in my hip. I did it, and for the first time in many years that sharp pinch was gone. I was so in shock I couldn’t even speak. I walked to the taxi, walked and not limped. feeling my normal tolerable level of pain, like we hadn’t just walked 3 hours up and down a mountainside. The next day I expected to be in bad pain, but just my usual pain of instability was there (minus the hip pinch which was still gone and has remained gone up to this day). It was a miracle that I received that day, and I remembered that God had promised me back in April that he would take care of me in Peru and he did. It wasn’t total and complete healing, but it was enough to start to change my life upon return home.
(On our way up the mountain and near the top of the mountain)
On the way back to the airport a few days later I was prayed for again, and somehow after making it back home 17+ hours later and sleeping in my bed, I woke up feeling like my normal pain days, no extra pain despite the long trip with walking through airports and sitting for hours on end. The trip home itself was miserable however for a different reason, mainly because a couple of us appeared to have picked up food poisoning or something like that which hit as we got on the plane. I won’t go into details, but it was not pretty and I felt really bad for the lady sitting next to me.
Upon returning home I got back into my gym routine, but was nervous about another trip coming up in August–a 4 day trip to Disney with my hubby and 2 kids. It was someplace we always wanted to take our kids to before they got too old (they are 8 and 10 now), but with all of my physical problems for so many years it seemed impossible. I was walking more in the community upon return from Peru, and I could now do the grocery shopping, which was exciting because I had to give it up for 3+ years because I could not walk that much. I also could do an hour or a little more in Target without using a motorized cart, walking on my own two feet. I limped a bit at the end, but still I could do it. This gave me some confidence for Disney. We had booked the Disney trip in the spring praying that I could handle it, and it ended up being amazing. I was able to walk through the smaller parks with rest breaks for shows and sitting whenever I could, and in the Magic Kingdom I used a wheelchair. I knew my limits and walking that far was more than my still weak right hip muscles and low back muscles could handle. I got over my pride with using one, and rode it with a smile. If we were in an area for awhile I would park it and walk in that area, but if we were going across the park I would hop in and let Yago push me around. I had to die to my thoughts of “what will people think when they see a young looking non cast/brace wearing person in a wheelchair?” I just had to die.to.it. Not easy, totally supernatural thing from the Lord.
(A magical night in Disney)
I started to have a life again after the summer. I got busy for the first time in years. I got very involved in a local non profit at various levels helping underprivileged students, as well as with our prayer team and other ministries at church. I no longer panicked when thinking of going places, wondering if I was going to be in too much pain. There are times when I overdo it, but usually a day or two of rest and I’m back to my baseline. I’ve come to realize that with my hypermobility syndrome that I will never be “normal” and pain free unless the Lord intervenes and chooses to fully restore my body. My ligaments which were already messed up from my genetics are even worse after all the compensations, surgeries, scar tissue, etc… and my pelvis and right hip and low back still have instability, and I have constant pain in my neck that results in dizziness and other issues that mimic POTS at times from instability. However I asked God for years to bring me to a place where I could function in a tolerable level of pain to do basic daily tasks, to do some fun things with my kids, and to be able to go to the gym a little bit to work out. He has granted these things to me. I choose to focus on what he HAS done and what he HAS answered vs the residual pain. Many people have prayed over me asking for complete and total healing, and that would be amazing if it happens! But if it doesn’t I am so grateful for how far the Lord has brought me.
Looking back at the time I was living through hell – doctor after doctor, misdiagnosed many times, passed around from one doctor to another because no one knew what to do with me, my pain minimized and made to feel like it was all in my head, the horrible life altering pain 24/7 with no end in sight, a very small support system and on and on. Finally when I was diagnosed years later then came the 5 surgeries, 1 of them failed, 1 of them incomplete, most followed by months and months of various therapies and interventions, a river of tears, years of not smiling (per my husband) and clinging to God each second of the day. As I look back now I see God’ hand all over what I was going through and I do see purpose through all of pain and suffering. You don’t walk through hell for 5 years and come out the other side the same. It changes you for the better or the worse, and I choose in that time to grow closer to the Lord who has healed me in so many ways at so many levels. Although at the time I felt like I was “missing life” and hated it, I am now grateful for all of the time I had laying on the couch, sitting on the steps of my soul with the Lord, feeling the comfort of Jesus when hitting rock bottom, digging into the Bible constantly to find hope because I didn’t feel like I had any left. The Lord showed me so many things over the years about myself, about Him, about others. He gave me compassion, empathy, patience, trust and the list goes on and on. I remember 3 years ago when I finally stopped fighting him and submitted to his will instead of trying to push mine forward. It was like I was exhaling for the first time. Submission has not been a one time thing, but a daily choice to follow God, to say yes to things the Lord asks of me when it’s really hard and uncomfortable, and sometimes to say no to things that others ask of me and I hear God tell me no. My prayer last year into this year has been for God to just show me the next step he wants me to take. If I were to see the whole staircase (like I used to want to) I don’t think I could handle it. Plus it keeps me dependent on the Lord when my control freak self wants to jump back out and take over. Like I said, it’s a battle to submit daily, but I’ve seen the goodness of the Lord and I know that he knows what is best for me.
So as I’m coming to an end here tonight I have some fun pictures that I’m including at the bottom of special moments for me throughout this past year. Places I’ve enjoyed, family that I love, friends that I care deeply for and am so grateful for, experiences that I’ve had. Last week was May 17th, exactly 4 years after my 2nd surgery which was my first one that was major, my first PAO. I was at an amusement park with my husband and kids that day called Cedar Point. I did again have to use a wheelchair because I cannot do long long distance walking, but I was there and I rode “big kid” rides with my kids and we enjoyed our day together as a family. It was something of a dream I had given up on years ago and it came true, and it came true on the anniversary date of my surgery. I didn’t plan that, in fact I didn’t even think of that until we were halfway through the day in a line and it hit me that it was my “surgiversary.” The last time I was at Cedar Point was right before things went downhill in summer of 2011. I felt like things had come full circle.
(Our fun day in Cedar Point)
I also in the past week decided to open up the surgically sealed bag that held the 4 (out of the 10) screws that were taken out during my last surgery in October 2015. I held them in my hand and immediately tears streamed down my face and I didn’t know why, but now I think it was something I needed to do to “let go,” something that I didn’t even realize that I needed to do it. I could continue to go on and on about ways that I’ve seen God working through this all the last 6 years, but then I would be up all night lol. Thank you for reading my heart and thoughts through the years and for the prayers so many of you have prayed up to heaven for me. I may update this every once in awhile, I’m not sure yet. I do know that tonight I have a heart full of gratitude for the Lord, for who he is, for how he provides, for how much he loves, etc… Lastly, I want to leave you with this saying I heard in a movie years ago that I love, love, love: God is good all the time, and all the time God is good. Remember that, even when it’s hard to see, he is always good and always at work.