24 weeks 2 days
Three years ago this week I walked into a PT clinic in my hometown to deal with some serious pain and weakness in my neck… I was suppose to be my initial visit for assessment. For 2 years prior I had been having neck pain that joined my SI pains… self correcting and bracing and strengthening was no longer working… I had been able to manage my body for a LONG time by avoiding “high adventure activities”, by being bed ridden during my menstrual cycle, by limiting activity after activity…..I thought I was just getting older and the increase in pain was what people meant by things like, you just hurt more as you age, your body gets weaker, things start falling apart…. ok I was only 30, but well, that’s aging right. Anyway, I had started losing strength and sensation in my left arm and was becoming very concerned. I was tired like I was pregnant, but I WASN’T pregnant, and I felt like I was losing my mind…. by whole body chemistry felt off, I was gaining weight, I was forgetful, I was in pain all the time, and with the weakness in my arm life was becoming MORE limited. I started at with a Primary care and brought in all my symptoms and history, INCLUDING my SI history…. 2 visits with her and if you o by her charts I had inflammation markers, low Vit D and a diagnosis of Fibromyalgia… I told her up front the trigger points in my pelvis were from SI issues and that SOMETHING was really wrong with my neck… no fibro here…. muscles that HURT! She wouldn’t listen, I moved on… another PC… no help…. tried my OBGYN… maybe he will listen to all the hormone imbalances I was feeling… sorta… he piece mealed me out to various specialists, after an unnecessary Laproscopic surgery to look for Cysts and endometriosis that he was POSITIVE was the cause of my low back pain…and painful/crippling sexual activity with my Husband.even though I TOLD him it was SI issues…. results of surgery…. put me on progesteron…. Then off to pain management for my neck… diagnosis… low thyroid, and disk herniation that were trapping a nerve – lots of cortisone injected into my neck… nothing helped… sent me over to Neuro God here in town… all ready to cut me open and stick some metal in when he had a change of heart…. mind you neither the pain management nor the neuro would even TALK to me about my lower body pain which I was still insisting came from my SI joint. In this change of heart he decides I should try PT before surgery…. YA THINK!
It was because of this trapped nerve that I would start on a road I had simple stopped on years ago because no one was listening. I felt like Dorthy in the Wizard off OZ. But If she hadn’t kept following the yellow brick road, what kid of story would it have been if she had just sat on it and cried, or said there was no way she’d ever get home? What if she had given up completely… wouldn’t be a very fun story to read… all the trouble she had that took her to OZ….. what if that was the end… there was a tornado, I’m all alone , except for my faithful pet, and my house killed someone and then I sat here…. She needed to find her companions along the way, they are the very reasons she kept going at times… brains, heart, and courage… we all need those things on this journey.
I had explained my problems over and over to countless medical professionals. I got everything from funny looks, to no response at all…. When I entered the PT clinic I decided I wasn’t really going to talk about the SI pain and I would just do as I was told and get the neck worked out and hopefully not need surgery. With in a few weeks of PT and traction the pain was receding in my arm… strength was coming back, and life was pretty good… I was standing up straight and the other meds were working on hormonal imbalances and I thought maybe, just maybe life would be fine…. after a short time of walking upright and tall I found that my SI was giving off signals from the past… intense pain that crippled…. I had to say something to the PT. I honestly don’t remember what I said, but I DO remember that he BELIEVED ME, or at least seemed to! He understood how it happened, he understood what was going on inside my body and explained it, just like I knew in my heart and had already been taught when I was first injured. He asked me to get a script for Low back pain so he could treat…. the journey to surgery began.
When I look back, I often shake my head, we did so much wrong, but yet had so much right, we were missing pieces to the puzzle… we were trying to shove those pieces that look like they SHOULD fit into the open spaces, but they don’t, I hate those puzzles, they are the trickiest kind. I say “we” because as a patient it is OUR job to give proper feedback to our medical professionals, they aren’t God, they don’t know everything, and in most cases, I really do think they try! I could be mad at my PT for “waiting 2 years on failed treatment…” But you see… we BOTH saw me getting better at points and then take nose dives again. At one paint far earlier he had tried to tell me I needed to look at other options… I, the patient, wouldn’t take no for an answer… I WAS going to beat this and get my life back! I wasn’t ready for alternatives, I hadn’t hit my limit of pain and debilitation… I honestly believe that this man did everything in his power and knowledge to help me get better, and when he had run through plan s A-Z he finally said… Aim, I hate to say this, but I think it’s time to look into alternative solutions.” As crushed as I was, it was what I needed to get better. It lead me to Georgia, it lead me to getting my life back. It’s all a process, part of your lives and our journeys. When we find companions we can trust along the road, it makes getting help easier.
NO matter where your at in your SI journey I say all this to serve as a reminder, the professionals we go to are trying, they don’t mean to hurt us more, they want to see us get better, they want to see us whole and live our lives…. they went to school , and they know a lot, but they don’t’ know everything. Knowing everything is kind of a hard thing to know! All the Doctor hopping can be frustrating, and painful, emotionally and physically. But you can’t give up on YOU. Keep going, keep asking questions, keep looking for the professional that is willing to learn with you, or already knows and is willing to share that knowledge. Answers are out there… but make sure you know what the puzzle looks like before you start trying to shove the wrong piece in.
So Thanks PT… I know I have told you before, but I’ll say it again, I never could have gotten here with out you! Thanks for being my Godsend and being at the clinic that day to do my eval…. can’t imagine taking this journey with out you, you have been many things along my road…. my scarecrow, my tin man, and my lion!
24 weeks 4 days
It’s Independence Day, and I have really settled down from the last few weeks of flare up. I was able to swim 700 yards without stopping yesterday, and I was careful, but was very excited about being able to swim. I wish I liked walking or bike riding, but those things just don’t’ come as natural as being in the water.
We celebrated the 4th like a normal family this year, and it was really very exciting. We parked, we lugged stuff across open fields of grass with hills and bumps, we laid out blankets, we played catch with a football, we talked with friends. There was no lingering smell of ice hot ( which I do love to use) there was nothing else I needed to carry with me to survive. It was just me and my family. Granted it wasn’t totally normal… As it was dusk I realized I had not completed my Home PT stuff yet, so while waiting for the sun to go down I did my ab and hip exercises laying on our blanket. My husband, the wise and caring man he is had packed an ice pack, without my knowing in case I needed it. It was such a thoughtful and tender thing to do. I appreciate his enduring patience with my recovery. never pushing, always encouraging, and forever standing by me. The best part of our evening came when a friend strolled over to our blankets with her 12 week old son. For the first time since surgery and in I can’t count how many years I felt safe and solid enough to hold a precious little one. It was thrilling. I was able to stand, rock, bounce, and rock with my little buddy and life was good. She was kind enough to understand the importance of this moment for me, and allowed me to post his pic. I couldn’t wait to share it.
24 weeks 6 days
So, lets talk about our piles of SI aides, helps, and our hope in the next product to fix us…. I have officially named it my “crap pile” a large pile of crap that has accumulated over my 18 year quest for stability. A few months back I took a picture of said pile… and to be totally honest it still wasn’t everything… I know I have run through at least 3 other back /SI support belts and endless string of pillows and other things. But here is a decent sampling of my pre -op pile.
Yeah – it’s big, and there is a lot there, meds, vitamins, belts, tens unit, yoga aides, Pilate videos, on and on. It was hard to put it all in the same place and see all the failed methods and treatments… this came to mind today as I was headed into my local health-food store to purchase yet 1 more thing I am certain will be added to my pile. You see this whole IT band thing pulling my kneecaps out to the sides of my body, I’m not liking it. I feel really good for the most part, but I HAVE to get these silly things to loosen their grip on my poor kneecaps. So after talking to one of the kids swim coaches ( who is also a massage therapist) she suggested I try Guasha. I didn’t roll my eyes as much as I wanted to, but I heard her out.. the main jist was tiger balm… lubricate skin…rake over it with a smooth object… something about my chi and blocked something something, You can tell I was paying close attention to all that. Bottom line is what I heard was “this will break up some of the adhesion and knots in the muscle. I realized it was the same or similar process as the Graston technique. So for those of you looking for information on yet another way to try and calm some of these muscle flair ups down, here are the links to both eastern and western versions of this… GuaSha or Graston Technique. I will tell you , you look like someone has beaten you with a 2by4 if you have done it right. It doesn’t hurt like when my PT gets in there with his thumbs, but I look like I
have serious road rash down my leg… here take a look.
and I was told next time I needed to use faster strokes and I would likely bring up far more color…. great!
25 weeks 2 days
It’s a Beautiful Saturday morning and I have been up for a little while just listening to my kids play just out of sight. I always like listening to their conversations when they forget others are around, they are just so cute. Today is one of my favorite weekends of the summer here in our little town. Every year there is an Arts Festival in our Downtown… oh wait now it’s an Uptown… we spent millions in marketing to change the perception…. don’t get me started… I’ll move on to the point. Every year in mid July crafters an artisans of all kinds come and set up their work in little white tents that line the streets. Potters, painters, photographers, sculptures in every medium, the list is really endless and I love to wander through every tent and look at every piece… I secretly covet their skills. My craft is scrapbooking, and I love it, but I really do use lots of templates to help spur my ideas. These people really make beautiful things. This will be the first year in the 5 years that we have lived here that I will not have a bodily price to pay by going. I can not wait for the family to be ready. I am excited to go see. look, and lean over things and not be like a woman with a 2 x4 strapped to my back!
It was a big week… The IT bands are a problem as far as my knees hurting, but I only notice it when I go to climb steps. I have continued using the Graston technique for the adductors and the IT bands…. I really do look like someone has attacked me and has beaten my legs and groin…. the dots seem to turn into bruises and then the bruises are tender to touch. BUT on this fine summer day that I can’t wait to go to this Arts Festival… I have to wear pants or a dress… I opted for a dress… a few weeks ago I was really starting to feel more human and I bought three. I guess I was getting tired of my yoga pant wardrobe, can ya blame me? In other news, my PT has cleared me to swim 2 times a week! I was shocked. The other side of this last set back has been really good so far. So two times a week I am swimming a half mile ( or 825 yards) and still not allowed to do flip turns. It’s hard to remember that sometimes. I am hoping that this will help put me back in the mindset of just generally being healthy so that I can shed a few m ore of those unwanted pounds. It’s just so hard to manage the recovery and be mindful of the food I put in my mouth… sometimes it really is just comfort food on the harder days. But once again those harder days are getting fewer and fewer. I am sensing I am at the start of another one of those two steps forward cycles and need to be mindful that what comes after the 2 steps forward is a step back… Honestly, I don’t want the step back, I want to finish off the last of this and just be.
I want to leave you with this… a part of a conversation that has been running through my mind over and over – because in 4 days I will be 6 months post-op. On my way out of PT this week my PT asked my least favorite question….” on a scale of 1-10 what’s your pain?” I said – I don’t like your scale… let’s make it 1-20… and right now the answer is between a 1-3 on any given day at any given moment.” No higher than a 4 since the burning butt flare up ended. He looked at me, smiled, said that is really great Amy, really great…. you know what…. I really truly believed this surgery worked.
Knowing how hesitant he has been to declare surgery a success, I sat in my car for a moment and just smiled… yes, it did it really really did.
25 weeks 4 days
I’ve had several people ask if I am worried my surgery didn’t work, or why I think it’s taking so long to correct muscle imbalances, am I frustrated or upset at how long it’s taking. So I just kinda want to put my thoughts out there on why this recovery can be so brutal and long.
I was told by my PT, my surgeon, the PT that the surgeon works with, and several patients that I should EXPECT a 6 to 12 month recovery. So I’m 6 months tomorrow…. so why would I be concerned about healing at the rate I was told to expect. ( That doesn’t mean I don’t get frustrated that it is taking this long, it just means that logically I understand that it can’t be undone over night.)
I had super big muscle imbalances…. for example hip flexors tight – butt weak hamstrings tight/low back weak. The muscles that are tight and the muscles that are weak must find balance. Balance is found through stretching what is tight and strengthening what is weak… AND trying to keep inflammation in check. Think of the imbalances like a teater totter… we want it balanced, but I started with 1 end of the see saw at 0 and the other at 10… I need them both to be a 5 and that pattern needs to be undone in what feels like at least a dozen combinations.
From my days as an athlete I realize it takes 6-8 weeks to get in shape. What does that mean… it means that it takes TIME to build muscle and stamina. Since I am starting at 0 with muscle tone and 0 stamina that means it took me 6-8 weeks to get to a 1. It takes another 6-8 weeks to build on top of that to reach a 2… you get the idea here right… I laid in bed all but a few hours a day for 6 months before the surgery ( possibly even longer). and then for about 2 months or longer post surgery… so… why would I think that this should be speedy?! The caviot to that is I think the more mobile and functional you are prior to surgery the higher up the scale you start… so now you have 2 more scales… strength and stamina both of those need to be rebuilt as well.
Related to thought 3, BUT I am hoping it will illustrate the idea even better. I have many friends that were NOT runners and somewhere in their late 20’s and early 30’s decided they were going to train and run 5k’s, marathons, or triathlons… even if I hadn’t been on my downhill plummet with SIJD at the time, I still wouldn’t have joined them… no an ocean swim or something like that, yeah, I’d be all over it! I digress. When you don’t run at all and are starting from scratch most programs suggest that it will take a YEAR to go from not running to being able to run a marathon. So if it takes a perfectly healthy person of average “inshapeness” WHY would I think that I could accomplish my goals faster?! Wondering what I am talking about… check out this link. How to train for a marathon from scratch.
I was told before my surgery that it takes 6 months to retrain my nerves how to send the appropriate and new signals to my brain to make the right series of muscles contract when I need them too. I don’t have a complete handle on how this works, but I do get at the basic concept that a new code is being written over an old one and it takes time for the body to catch up and function on a nerve level.. not just the muscle level. ( Yet another reason why this recovery is so long… we can’t speed up the way the body is designed to work.)
I am progressing steadily. I am getting better and better as the weeks pass on. I can’t avoid set backs completely, my life is too full and active at this point. When I do more in life and in PT there is a good chance I will flare… If I don’t rest as I should or take even account how active my day has been I can find myself in murky waters. Yes, I am still icing, but I am also doing laundry, picking up stuff, loading dishwashers caring for pets, sitting and standing for hours and hours at the kids swim meets and practices, plus work on various other projects around the house, AND still going to PT and doing at home stuff. I think that I might even be able to vacuum in the next set of weeks… maybe even try riding a bike….. It’s a far busier life than I have lived in years, it’s good, it’s really good!
I can’t do any more than I am doing to get better… my therapist says it’s normal and good progression… how can I argue with that? I trust that he knows what he is doing and wants what is best for me, and understands my desire to live and active and athletic life… so while frustration and scares still do hit me, and there are days that I never want to see an ice pack or a pill bottle ever again- I knew it would be a long haul when I signed on the dotted line to be cut open….
Yes , when I awake from surgery and felt to much relief and started gaining so quickly I thought maybe it would only take 3ish months…. then maybe only 5…. then I realized… nope it’s going to take what everyone said it would 6-12 months. Never lose sight of the fact that a gain is a gain and that is what we are looking and living for!
I really do hope that seeing my thoughts on recovery at this point will help you all in your own!