It’s been awhile and I have to admit I have been avoiding writing on my blog. I keep waiting for a stream of positivity to write about, but it appears that it’s just not going to happen anytime soon, so I thought I would update anyways. I am part of several hip groups on FaceBook and it seems the majority of people don’t have all the comorbidities I have and seem to get surgery and get better within a few months (with the exception of minor things here and there like a tight muscle, some scar tissue, achiness, discomfort when pushing themselves too hard in exercise, etc…). I have stopped reading most posts because all it did was make me feel even more alone in this journey. People are like, I’m in pain because I spent an hour at the gym, or shopped for 3 hours, while I’m here like, I’m in pain because I walked to the garage/put away laundry/or basically because I decided to get out of bed this morning. Wow that sounds sarcastic I realize but it’s really not, that actually is reality for me everyday. Anyways, I’ll bring up to speed the past month and it’s happenings, then discuss a little about my follow up with Dr. Ellis and his PT this past Monday and then talk about my declining mental health these days. A topic that is so sensitive and labeling, that people avoid talking about (even I did for so long) and I’m over it now. I’m depressed………..there I said it, let the world label me in a negative manner if they must, I don’t really care anymore about labels (more on this later).
So I was doing my PT, actually had 2 weeks where my pain was lessening, was progressing, and starting to have some hope again. I was getting less muscles released in ART therapy and stopped myofasical therapy all together. According to my husband he saw glances of me that he hadn’t seen in a “very long time” because I was kind of in a good mood. Then the 3rd week of PT we kicked it up a little and I started to develop some old symptoms returning again (nerve pain in feet and ankles getting worse–it never has gone completely away, but was low level and tolerable for a few weeks) and something in my pelvis felt “off” but I couldn’t figure out what it was. Last Monday I went to PT and said my pelvis felt off, but we couldn’t figure out what it was, so we went and did my work out, including stepping things up to a whole new level, which within 24 hours I realized was a really bad idea and had the worst pain ever, like pre-surgery pain when my pelvis was all out of whack (from tight hip muslces) and had horrendous nerve pain down both legs and horrendous back pain. Took it easy the next week and tried some self releasing things will a ball and my myofasical guasha tool. It helped a little, but something was still off. I went to Columbus Monday and saw Dr. Ellis and his PT and PT said to back way off, back to the basics from the first weeks again, and that my rehab needed to go much slower with a bigger focus on core stabilization, shorter PT sessions, and for my PT to stay right with me to make sure I was activating correct muscles with each exercise. She has seen soooo many hip patients being part of the hip team there, and only 1 that had as many issues as me (thanks to all of my comorbidities-PAO on left hip, still have hip dysplasia on the right hip that was scoped where we are hoping to avoid the PAO, pelvic instability, hypermobility that they think is most likely a connective tissue disease because it affects all my joints pretty badly causing pain and instability in my spine and neck and the rest of me is super bendy, previous SI joint injury 11 years ago while working, and years of poor motor planning and muscle recruitment. I’m sure there’s something else I’m missing here.) Anyways I am a challenging patient that needs to go super slow with rehab. Dr. Ellis examined my hip, asked me tons of questions, re-checked my measurements on my previous imaging and said the hip theoretically should be good, and feels good when he moves it around; however I know that we are both hoping this scope was successful, but also both know there is still a possibility that these muscles around my right hip keep tightening and guarding due to the borderline coverage I have there (and combined with hypermobility) and haven’t ruled out the possibility of needing a PAO on this hip. I asked and he said at 9-12 months it will give us a good idea if this surgery was truly successful, so I need to continue slowly with PT and hope things pan out; otherwise I have a feeling I’ll be looking at another big surgery this year. My back/pelvis/nerve issues were one concern we discussed, as well as what I mentioned before where the muscles around the scope hip aren’t “letting go” like the ones on the other hip did by this point after my PAO. I’m trying not to stress too much about it, but it’s hard because I feel like my life is once again put on hold in this waiting period to see if things will work out or not. Anyways, he said if I wanted to get checked by a spine physiatrist it would be ok, as enough time has gone by post surgery where it would be appropriate. Everyone says I don’t present like a “back patient” even though I have back and nerve pain, it appears more like spinal instability ( likely due to the pelvic instabilitly I developed when my hips got tore up and of course in combo with my weak muscles and poor connetive tissue)based on where the pain is and the patterns of it. I think they are right, but want to make sure for peace of mind. He also wants me to see a sports psychologist for the mental health aspect of going from being an active person to practically housebound most days (more on this later).
Well, the day after I saw them I realized although my hips looked in alignment something was definitely “off” in my sacrum. My myofascial therapist (who I hadn’t seen in a month) knew I was flaring because I texted her end of last week that I was a mess, texted me and said she had a last minute cancellation (which rarely happens) if I wanted it. This WAS A GOD THING!! It was exactly what I needed to see what was happening with my sacrum. I went and it was rotated/tilted to the right and pulling on my sacral nerves on the left, as well as twisting the lumbar vertebrae. It was doing this because of the hip rotators on the right were so tight and full of trigger points it literally was pulling my sacrum off of my body on the left This is exactly what happened a couple of years ago when things got bad initially. I think I have a weak left SI joint from previous injury 11 years ago, then pair that with tight/guarding muscles around my right hip and voila…..rotated sacrum with indescribable pain. I had 50% reduction in nerve pain immediately (although the other 50% was still there along with back and back of the hip pain) and I could still feel trigger points all through the rest of the muscles, but at least she released my sacrum a little to give some relief. Today in PT we did some light exercises only to get the blood flowing and turn on my back and hip stabilizing muscles, and I received a TENS unit which seems to help some too, at least when it’s on.
Well then onto mental health. Sliding this far backwards (feeling like I did pre-op and immediately post op) this past week has really brought me down to a whole new level of depression. I am beyond frustrated, and have been trying to fight the depression, but I just gave into it and allowed myself to admit that. Dr. Ellis was so kind and brought this up to me saying he could sense it and see it in my eyes, and said anyone would be in my circumstances, and that I am not crazy (even though I feel like people think I am crazy because I look and move normal but am in horrible pain-which is why I don’t like to talk about it to those outside of my hubby/sister/and parents), but that I am most likely situationally depressed. He recommended as I said above that I see a sports psychologist (which my PT is looking a few up for me) to talk with someone about the underlying issues I am dealing with as a result of losing my active life for so long now. I guess I’ll give it a try. If you would have told me 3 years ago this would have been my life I wouldn’t believe you, I wouldn’t have wanted to hear it or think it possible. I can’t even explain depression to someone who’s never experienced it. It’s not something you can “suck up” or “get over” or “just be positive” about. I daily mourn the loss of the person I used to be, the person who danced around my kitchen with my kids or played freeze tag and ball in the yard running around with them (and now can just watch movies or lay on the floor to try and play with them), the person who loved to clean the house or go for a run or do anything to keep moving and active all day long (who now considers active a 10 minute visit to pick something up at the store then has to go home and lay down to calm the pain), the person who was a productive/working member of society (and can’t even think about returning to work anytime soon), the person who loved to go out and socialize with friends to dinner/drinks and even occasional dancing (and now can only get together at people’s houses so the ability to lay down is there or a very fast dinner with my family where I have to sit an hour or less and even then am suffering in very bad pain), the person who looked forward to summer to take my kids to the park/zoo/going on vacation (who now is freaking out that I’ll be the one to deny my kids a fun summer once again due to physical pain). I guess my mind is my own worse enemy these days, but how do you let go of who you were and what you love doing?? I told my husband I think I am going through an identity crisis with all of this. I know there are others out there who deal with long term physical pain that can relate (and I’ve met and become close FB messenger pals with a lovely, lovely woman dealing with many similar issues of me), and I want to say if you found this blog and you are dealing with long term pain and are mourning the loss of activity and your former life, you are NOT alone (even though it feels that way). I know I feel SOOOOOOO alone most of the time, and I have my breakdowns a few times a week lately where I feel even lonelier, but I am doing my best to get out of bed and take care of my kids and push through the days as they come. I know too that God is with me (as I’ve said in my previous posts), but sometimes that yearning for human understanding of this is what I need. I am trying to trust God each day, but I am struggling there lately. I do see his hand in this, in what he’s trying to teach me, but it doesn’t make it any easier most days. I also see when things get to be too much how he intervenes, when things happen like yesterday getting that text from my myofasical therapist and being able to get a little relief, it’s like whenever I think he is absent he shows up and gives me exactly when I need to keep going in those moments. All the promises the Bible gives, and all the times he’s delivered, yet I still fail to trust and allow my fears and worry to get the best of me. I have a long way to go to develop deep faith, sigh…. Anyways, this is where I stand right now. It’s not a good place, it’s just this place of waiting once again, of trying to be patient, of stopping to try and plan out my future, of realizing God is in control and things will play out as he has planned them, not as I want to try and plan them (a life lesson to be learned by me over and over and over again). Thanks for reading, will try not to wait too long to update next time. Perhaps it will be more positive one of these days:)