Well it’s been a month since I’ve written so I figured it’s time again. About a week after I wrote last month’s post I decided to quit PT. I went back for one session and we took it easy, but I was still in a significant amount of pain and just felt a lack of trust for my PT going forward due to the terrible flare. I talked with my ART (active release therapy) chiropractor that I’ve been seeing for over 2 years about things and he suggested I come rehab at his place. He is certified in the SFMA and FMS (selective functional movement assessment and functional movement systems) which are basically a way to assess movement patterns and finding where the dysfunction is, then breaking it down by levels from simple (floor based stuff) to complex (standing and using weights and dynamic movements) with a whole progression in between. Everyone has recognized that my movement patterns are messed up, that I have a weak core, and am a mess, and my PT had the right idea in some ways, but just kept progressing me too quickly with inappropriate exercises that my body was not ready for. I initially just took a week off of PT and cancelled those appointments praying on things and waiting to hear the details from my chiro, and then called her the next Monday and just told her that I didn’t think things were working out and that I think she is a good PT, but I wanted to try an alternative type of therapy since I was responding poorly to the way we had been doing things. She thought it was a good plan and wished me well and we parted on good terms. I started the following week, working with the personal trainer that has been with my chiro for years (and my chiro has trained him in the FMS), so weekly I get the ART and then get the rehab portion by his trainer twice a week, and they consult with both me and together on things. We are going slowly and addressing not just the hips and core, but the upper body as well. Tim (my trainer) says that “you are only as strong as your weakest link, and for you it was your hips/your core” and that because of that my entire body from head to toe is now jacked up and has “dysfunctional movement patterns.” I have a weak core, weak posterior chain, and of course my brain forgets what muscles to fire correctly from a neurological standpoint. He is great in the sense that he is one on one, constantly poking and putting his hands on the muscles that should be activating, correcting my posture, and just making sure I keep correct form and an activated core for everything thing I do. We stop each exercise at the first sign of fatigue, because once the body fatigues it starts to compensate which is what we are trying to correct and not add too. He says for now I have to think about everything, but one day it will start to click in my brain and won’t take as much thought. So anyways this is my third week in this and I have seen small improvements. I still have pain and haven’t started increasing my activity level yet (at the recommendation of Tim until I get a bit stronger-he’s trying to keep me from flaring) but the pain is less intense even on my worse days. My right hip muscles are slowly getting stronger and the hip is feeling more stable then it was a few weeks ago. I’m having less concerns about the remaining mild dysplasia; however I still have concerns about the lumbar and sacral instability, as the nerve pain is still present. The odd thing is that when I assess my pelvis much of the time if looks to me as if it’s in a decent position, but yet my nerve pain is still there like usual, down the back of my left leg into the foot, and also in the right leg in same place but much milder (like it’s been for 2 years now). Being that symptoms are still in both legs supposedly it doesn’t present as a disc injury but instability (or so I’ve been told my 2 PT’s), so I’m hoping with more strengthing and motor pattern stuff in conjunction with the ART for releasing/realigning that over time the spine will become stable. I did consult with the OSU PT on my new plan and she thought it was good. She was very familiar with the SFMA and FMS and thought it would be a good route for me to take. She also set me up with an appointment with a co-worker of hers who is on the hip team, but specialized in manual treatment of the lumbar/pelvic complex to assess that whole area and see what he thinks. He also does the dry needling, and I have areas of scar tissue from my first scope and my PAO that seem to continuously cause pain and tightness that I would like to see if this helps. I decided to hold off on seeing the back doctor until I see this PT to get his input. I couldn’t get in with him until April 2nd, which I was bummed initially, but actually am glad now because it give me a few more weeks to work with Tim and my chiro to see if any improvement come about in the lumbar/sacral spine from this new rehab approach.
I also decided to take Dr. Ellis’s advice and go get genetic testing done for connective tissue disease at OSU. Upon research and a guestimate by him it seems like I most likely have Ehler Danlos Syndrome. I apparently am freakishly hypermobile (as my chiro calls me gumby and circus freak-but in a nice way, lol) and looking at symptoms that go along with that (GI issues, reflux, poor sleep habits-due to too much adrenaline produced by the body-, low blood pressure, cold hands/feet due to poor circulation, dizziness/lightheadedness when getting up quickly, cervical problems and instability, poor joint proprioception, and I’m sure I missed more but it’s late and I’m tired) I have pretty much all of them and have for as long as I can remember. There’s really no way to “cure” this disorder, but to manage it with lifestyle adaptations and try to keep your body strong without pushing it too much as to not cause further damage to the joints. It’s not a great thing to have, but it does explain all the weird stuff I’ve had going on most of my life, as well as the pain I’ve always had laying at a low-level in my muscles and around my joints, but thought was normal (which I know now was not normal). Anyways the reason I am getting tested since there is no cure is I want to rule out one type which can cause major vascular issues, particularly by the time you are in your 40’s, and since I’m coming up on 35 in a few weeks I figure it would be good to rule it out or know what I am up against in the future. The first appointment I could get was in July, so I have a few months to wait on it.
So where am I mentally this month? Well, I decided at the moment to not go with a sports psychologist. I think they will try to talk me up saying how this is not forever, that I will get through it, that it’s normal to feel depressed, to find other things to occupy my time while I go through “the process”, to keep positive and find my inner strength, etc… Those things are all great advice, but I really think my inner strength needs to come from God and not myself because I am not strong on my own, and I am not going to find God most likely in a sports psychologist office. Not saying that it’s impossible, but just not likely. With feeling more depressed the past couple of months I have not been reading my Bible hardly and praying less and less and my husband suggested perhaps that’s why I have been feeling more depressed. I never put it together but the time when I get the most down I should have been seeking God in his Word and instead just wallowed in emptiness and distraction, and he’s right that probably is why I’ve been struggling so much. I started getting back in the Bible last week and it is refreshing and renewing to my mind and soul, and I was spending more time praying and meditating on things and feeling more at peace in my soul. Then, I had 2 days where I was feeling less pain and feeling better and on the 3rd day the bad pain came back and I realized that in the 2 days I felt better I did not read my Bible and prayed very little and realized that perhaps that is why God has not taken me out of the physical suffering yet, because maybe I’m just not ready from the spiritual standpoint. He has worked on and in me so much in the last 3 years since I invited him in right before my suffering started, but the moment I start to feel better I subconsciously put him in the background which is what I keep saying I won’t do when I get better, but yet I still fall into that trap. Obviously He has a lot more work to do in me still and I just need to be patient and trust that He knows what’s best for me, even if to me it does not feel that way. My sister has told me several times that during the 4 years that she went through terrible suffering (bilateral PAO’s, leukemia, stoke, a stem cell transplant, reactions to the transplants, and several other things) that she prayed crying out to God to deliver her from the living hell she was in, but he didn’t for a long time; however looking back now she says that if He had taken her out of it at any point before he did she would have fallen back to her old ways and not be the spiritually mature person she is today. So I guess I am just not there yet, or perhaps spiritually I will get there and physically I still will have issues and pain. I don’t know what the future holds. I am trying to kick fear out of my heart, as I’ve seen the faithfulness of God in my life over and over again and I am trying to fully trust that whatever I face He will be there with me and get me through it.
My husband and I talk a lot about things, and we both have come to an understanding that our life will never look the way we wanted and expected it too years ago when looking at our future due to the issues I’ve had, and with the increasingly worse EDS stuff will likely always have, and we are adjusting our plans and expectations to a different level. I had guilt with it for awhile, but he is so supporting and loving and says that maybe our lives won’t be what we expected, but will be something better. Probably by the standards of the world we live in that “better” wouldn’t look better to many, but by the standards of God and things that matter eternally like love, relationships, and faith it will be “better.” For now I’m just going to keep praying for inner change, acceptance, revelation, and faith. Oh yeah, and reading my Bible! Thanks for reading, and God Bless:)