Another set back, visit with surgeon, more uncertainties, and trying to fight depression

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:)

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8 thoughts on “Another set back, visit with surgeon, more uncertainties, and trying to fight depression

  1. I understand the frustration you’re going through and it’s not easy. I struggle daily with depression because not only of my heart issues but because of my daughter and my pain and I see her go through. Even know her surgery was successful and everything went well she’s got constant pain. This is an invisible disease nobody can see it but the pain is there. I hate to say it but it seems like it’s just one thing after another at times which is hard to be strong and not fall into depression. I do think God has a plan for us it’s just frustrating not to know what it is. They say god can only give us what we handle and I truly believe that. have you ever watched the disney movie pollyanna? I watched it with my daughter the other day and it made me think and realize that no matter what I have to try and stay positive. Pollyanna play the glad games she always seeing the good in everything no matter what. I wish you joy and comfort and the strength to get through this, it’s not going to be easy but I have faith that you can do it. prayers are with you

    • Thank you so much Nicole for sharing and for your kind words. I hate that others go through so much pain too, but it’s nice to know that someone can relate (because on a daily basis it’s hard to find someone that can relate). On another note, I haven’t seen that movie since I was young, but I will try and get it for our family movie this week when we go to the library. I need positively loaded in my brain whatever ways I can get it these days:)

  2. Dear Julie,
    My prayers are with you every day. I know that depression is a terrible things to face and overcome. I wish I knew how to help you but I don’t. Please call is I can do anything to help even if it is just to listen.
    God bless you and yous,
    Darryl

  3. Dear Julie, it is my first time writing to you. I am reading your blogs because my dearest friend is going to have a hip scope next Wednesday and possible PAO in the future. She is young and active with two beautiful children like you and suddenly she receives this devastating diagnosis. It is hard for me to imagine what she is and will be going through. I thank God for showing me your blog so I know how to support her through encouraging words and lots of prayers. She is not a Christian yet but I truly believe that God is using you as a tool for helping me to walk with her through this difficult journey. I promise to keep her and you in my daily prayers. May His healing, mercy, peace and strength be with you everyday.
    Blessings,
    Heidi

    • Hi Heidi, thanks so much for reading and posting this and for your prayers. The fact that you are researching things regarding your friend shows what a great friend you are:) It has not been an easy road for me the last few years, but I have learned a whole lot and grown closer to God through it, I believe there’s always purpose in suffering (doesn’t always make the suffering easier at times though). Taking the initiative to go and talk to your friend, listen to her, let her cry and spill her fears without trying to help, just by listening and being there would be my best advice. Maybe this is Gods calling to her through her difficult hip journey, and perhaps you can be her guide. I really do much appreciate your words, if I can reach out to others and help them in anyway at all then my continued journey through this continues to hold purpose. I wish your friend success in her upcoming surgery/surgeries and will pray for God’s protection, guidance, and calling to her, as well as guidance for you on how best to support her. God Bless!

  4. I’ve been disabled or semi-disabled for 5 years starting with the hip issues. 3 labral tears, 2 scopes (right one failed), and a derotational FO coming up in May. Every year I keep getting worse too, and with each new diagnosis I cry and get somewhat depressed. What other 26 year old wouldn’t cry when they are told their whole spine is degenerating? Your doctor is right. Think of all your friends. Think of how they would react if they were plunged into your situation. You have a very depressing situation, so it’s not unusual that you are starting to actually get depressed. You are probably stronger than you give yourself credit for 🙂

    I know that I will never dance again. I will barely be able to work and have kids. My degenerating spine is the thing I worry about most besides my hips. Due to the EDS I’ll never be pain free. I’m kind of okay with it now. I don’t know how to explain it, but I have accepted my life as it is knowing I will never be pain free or “normal” again. I think acceptance is something that comes with time? But I have had several episodes of depression, the most severe being ages 17-20 when I was anorexic. And when I was got my first labral tear I relapsed into anorexia and mild depression.

    I was in a lot of emotional pain. I think the physical pain really got to me. I just felt my life wasn’t worth living anymore. I felt very out of control like there was nothing I could do to make the future any better. I feel pain strongly so I have been very disabled by these three labral tears. So I know what you mean when you read about people complaining about not being able to run as MUCH, or things that seem minor. Shoot, if I could work with minimal pain with a labral tear I’d be happy as a dog. After my second labral tear I could barely walk. It was really bad actually. I had just gotten kittens and I could barely play with them or do household chores. It was so bad sometimes just doing the dishes and the laundry were enough to wipe me out 😦 I haven’t danced in 5 years. I have barely done any exercise. I guess I’m lucky I am naturally thin. I’m not anorexic anymore, but I still have an underweight BMI. I have spent 95% of my time in the house since my first labral tear 5 years ago.

    I don’t have a normal recovery by any means. I heal like an elderly woman from even a scope and I’m in my 20s :/ It bothers me when people on the hip forums refer to stories like mine as scary like it was my fault in some way that I have EDS and an abnormal recovery. I am 15 months post-scope on my left and it is probably 75% of normal and still healing. That’s why I really didn’t want another failed scope 😦 Maybe by now you have figured out who this is, lol.

    I don’t think depression is something to be ashamed of, and I never was though my mom tried to make me ashamed of it. I think about myself now, and I am a different person now, but I still have a fulfilling life being confined to the walls of my house. God bless the internet 8D I write stories, play video games, chat with friends, read, watch TV, etc. The great thing about video games is that if you get really absorbed into it, you forget about your life. Not completely, but it gives you something to focus the angst on. I write fanfiction as well, and majority of what I write is angst XD The prose is more beautiful and emotive with angst. Someday I’d like to write my own fantasy story, and perhaps one based on the anorexia, but I’m still practicing for now. And writing gives you control of the characters. In your own life you are lacking control right now over how your body is healing, but in a story you write, you control everything. Well, actually your characters control some of the story. If you write fiction you’ll see what I’m talking about, lol.

    But I guess I’m somewhat lucky since I have been playing role playing games since I was a very little girl :3 It sounds crazy, but it might be something to look into. It was a great bonding experience with my sister and mom as well 🙂 Actually my happiest memories are of playing video games with my parents, not really the vacations. I can tell you all of the games my mother played with us. How we cried together when a character died, cheered for each other during boss battles, and shared our love of the stories. It’s a very strong bonding experience. Even now, I reach out to others who love the same video game characters as me, and we talk about it for hours. Growing up I had no friends that loved video games, and it made me feel kind of lonely. I had friends, but they all thought video games were pointless. So I feel very lucky to have lots of friends I met through fanfiction to talk to about it :3 Seems kind of silly, but it makes us happy, so I don’t really care 😉

    Since you seem to like writing, perhaps give fanfiction a try? This is one of the biggest fanfiction writing sites: https://www.fanfiction.net/ I never thought of writing a story in a hundred years, but I found I loved it as much as ballet, and I’m actually really good at it. I started doing it a few months after my first labral tear. It gave me something to focus on. Or just reading is lots of fun. Be careful what you read though. Anything with an Mature rating can be way too much. Just trust me on that XD If your kids like a certain cartoon, like My Little Ponies, you can write a story and have them help you with it. They might get a kick out of seeing some of their ideas published. There is a sister site, https://www.fictionpress.com/ where you can publish original stories, but if you are ever planning on publishing something, I wouldn’t post it there as someone could steal it. I get some of my ideas from my health issues. I have plans to write a fanfic story about a character that gets early onset demetia (at 35) due to mako poisoning, and the story deals with him coping, and his eventual suicide. That sounds depressing, and it is, but this is real life (not the mako poisoning as that is specific to the story). Like I said, I like to write angst as it helps me get it off my chest. Writing gives me a medium to give voice to my pain and frustration in an artistic way.

    I think acceptance will come in time for you, and hopefully you will improve physically in the meantime. I agree, as someone that is in remission from anorexia and has had multiple episodes of depression, it is not something you can snap out of. With time and therapy, I was able to realize that neither were my fault, and it helped me heal.

    Another thing that helped me cope was pain management. You don’t have to tell me details as I know the issue is rather private, but it has helped me a lot. Chronic and acute pain are very different. Chronic pain is soul consuming.

    • Thank you for your words of encouragement and suggestions Jessica. I know you have been through so much through the years and your drive to keep pushing forward is very inspiring to those of us who continue to struggle in the groups. I hate that others know chronic long term pain and struggle even longer then I, but at the same time it is comforting to know that someone understands the physical and mental aspects of this reality and of giving up the things you love to do. Thank you for your response, it means a lot:)

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