About Spacers, Personal Accountability, Goals, and other fears that haunt the mind

*Warning: Potentially disturbing Pic at end of post*

Lots on my mind since my last surgery.  First, I can say definitely that this last surgery was the worst. It was so incredibly painful and so physically limiting that I was terrified something really wrong had happened. It was more difficult because something was being removed and something else added in place… in this case my antibiotic spacer oh and also each time they go in, there’s more tissue removed and more of my hip is cut off to make a clean stitch area.

Mentally it has been tough because I was incapable of doing basic things. For the week (or maybe longer?) my dad really had to help me get out of bed with a combination of a push-pull movement. It was terrible. I felt so bad for him having to do so much for me.

My physical therapist reinforced the things my surgeon had; namely that I needed to protect my spacer, use assistance when moving and stay on 50% weight bearing.  This thing functions like a hip for the most part but it is not.  So, keeping that in mind I have been as good as gold. Lots of crying –  mostly out of fear.  And a bunch from pain.  It’s really scary when the signal from your brain to your limbs seems to break up and you can’t forcibly move your body.  Awful.  I really did not expect the issues I had with this one, mainly the crazy amount of pain and the worst was any movement just made things terrible.  Then I had a hematoma that made my bathroom, the carpet and several sets of sheets look like some kind of violent murder scene. I had a LOT of scares, fears. There were at times where I lost so much blood that I was convinced I would die. Fortunately I saw my surgeon a couple days after it began (of course it started late on a Friday night) after some discussions and exchange of pictures to the nurse and the surgical Fellow. I even ruined a chair and pretty sure they needed a hazmat team to sanitize that place after I began leaking blood everywhere.  It turned out; it wasn’t circulatory blood, but the result of a pocket of blood that was just sitting inside. He said it wasn’t uncommon during  surgery, especially considering how much blood I lost (I ended up with 5 more blood transfusions while in surgery and later once I was on the unit). That made me feel better because normally a body will re-absorb the blood but if there’s a way for the blood to get out, it will. In this case I ended up with an open wound again (which he made larger…in his office…with a scalpel…and no pain meds…or lidocaine…yea. I actually didn’t know what he was doing, but he kept asking me if this hurt or that hurt…Finally I told him it didn’t feel good by comparison it wasn’t a big deal) and therefore the blood had an escape path.  Anyway I really thought I was going to die until he told me the blood was excess and not going to kill me.  I have no way of knowing these things and really thought this was it.

Things are much better now. The remaining drainage has slowed down significantly and during my appointment the other day he was very pleased with my progress. I don’t go back for 8 weeks unless I need to see him before then. Physically I can tell I’m stronger but then I end up having a day like today where I couldn’t stand. My legs shook uncontrollably. I couldn’t stand unassisted.  I was really upset.  Even once I was in a reclined position I was shaking.  I’ve had this happen several times since surgery but everything is ok technically. During my x-rays it was clear my spacer was in the right space, had not been forced down into my femur more than it was supposed to be.  And finally, he told me to continue using a walker, move to a can when I’m ready and to start with short distances.  Right now the cane I use in my closet or the bathrooms. Small rooms but I still need help walking and especially where balance is concerned.

While in the hospital I was so upset because of the pain and my inability to walk and I felt like my progress was not good.  I recently caught a show called My 600 lb life…a story following morbidly obese people getting gastric bypass.  Many of them were normal folks who let an emotionally based eating disorder get the best of them and some were just lying to themselves. As I watched people during their hospital stay, talking to the cameras, interacting with their families…I was mortified. I started thinking about how I asked to keep my catheter an extra day because I was in so much pain I couldn’t stand on both feet.  All the pain, the crying during physical therapy. And some of the people on  the show had spouses or parents that were their enablers…its hard not to enable someone who is seemingly helpless…but as I watched these people, my stomach churned with shame. I can’t believe the crying I have done, the anger I have had, all the giving up their lives for weeks on end from my family.

My mom had the kids and was dealing with them day in and day out. She’s a bit neurotic so small things set her off and she needs my dad to support her. But here was my dad, teleworking or going to one of his offices, stopping to get things for me…groceries, prescriptions, cooking, making sure my meds were laid out each morning I so I don’t have to cold infuse. Helping me in and out of bed, a couple times I had to call for him in the middle of the night…which I hated but when I couldn’t get out of bed…I couldn’t do it.  And don’t get me started on what I call my newfound shame: the bedside commode. I’ll just let that set in for you and leave it.  There are not enough thank yous or apologies I can ever give him for the care he gave me.  Always made sure I had protein heavy meals, encouraged me to eat even though I didn’t want to. Listened to me cry, did my little errands like…getting and putting socks on my feet or if I forgot something in another room he would go get it.

Granted, the very moment I could get out of bed by myself I never asked for help again except when I realized I was bleeding out from my hip (it was an enormous and shocking amount, I think he was worried about that, not me waking him).  He was so overworked. Doing laundry constantly, just…everything.

Anyway…so now since I first saw this show yesterday I see these people, being enabled, not taking account for their health and I am terrified of being one of them. Is that how the nurses thought of me? My surgeons…do they think I’m my own worst enemy and not living as I should?  Do they think I have psychological issues and exaggerate?  Some lazy fat chick who didn’t want to walk?  Who cried when she had to go to the bathroom? Is that what my friends think?  My co-workers? As I sit around quite literally trying to heal…do they think I’m lazy? Do they believe I have pain or are they ‘over’ me and my pain and issues?  And my care team…my physical therapist…even though I always joke complain about the hard work he makes me do…does he want to shove a sweat sock in my mouth to keep me from that? I always do more than he expects, even when my pain is a 10…and there have been several of those days. My nurses…both for my orthopedic needs and my infusion (PICC line) needs…do they think I’m living correctly? Or do they loathe coming to visit?

In my head I’ve all along and now even more so been judging myself against some set standard my brain fabricated. There is no standard. There are no prizes for pain or surgery. There is no reward in trying to not use a walker and further injuring yourself (did that before the last surgery…fantastic). As much as my surgeon reiterated my need to use an assistive device to walk, I think he knows that I’m doing that in my head and perhaps he was trying to make me feel ok.  There is no handbook on this stuff. Every day, everything is a chore and my tantrums where I cried or got upset or had a panic attack…is that because I have a legitimate cause or am I giving up and whiney because I have a shitty personality?  My friends, family – everyone has been so supportive and I am thankful for that. But I wonder if they secretly think I’m a lazy, unmotivated, enabled crybaby.

Now…about weight.  I have been much larger than I am right now.  I lost weight, and maintained that for 8-10 years. Then I lost about 30 or so pounds because of…well who knows? Stress most likely. I wasn’t trying to lose weight but it happened.  I used to get worried I was somehow sick to lose weight mysteriously but no, it’s normal especially when someone is stressed out (and a few years of chronic pain will certainly do that).

I’ve lost a LOT since my hip replacement. I’ve lost a solid 45-50 pounds for where my ‘average’ weight is now. I’ve also gained and lost 5 here, 10 there, and yo-yo’d for months on end. But still at the end of the day I can say that those 50 pounds…wait…ok…nope 70. Apparently I can’t do math.  Ok so still 70 pounds at the end of the day.

Probably one of the reasons I’ve been much heavier is because well, I think I’m sexy and I’m this sexy at this weight, I don’t need to lose any!  Lol. I know, I know…I have friends in good shape and friends with enviable bodies who criticize their bodies and if they ever thought they were sexy, they’ve never let anyone in on it.  But me…well I just walk around thinking I’m hot stuff. I’ve suffered with the huge ego thing because I keep getting cut open and hey having a giant open gaping wound can cut down a person, even one so full of herself the ego spills from her pores.

Over the last year, I’ve devoted every day to eating at best a modified Atkins diet of high protein/low carb meals…so the weight loss of the last year really makes sense (although yes, some of it is related to stress).  And given my surgeon wants me to lose 100 pounds, as I was sitting here today with that show on in the background I realized shit…from my last weight I’ve lost 18 pounds…so…while a 100 seems like a lot, 88 doesn’t.  Yea, weird how the mind works.  Having had the nutrition thing drilled into me by all my doctors over and over and over again has caused me a lot of food anxiety. Which is a big excuse…but I know I have to eat…and I have protein goals. I have been healing nicely and I’m certain a lot of that is because my dad was making sure I’ll eat. I can damn sure go a day or so without any food…and I KNOW that is not healthy.  My body needs fuel constant high protein fuel to heal my muscles and infection.  And my attitude has definitely changed…not eating anything doesn’t do shit to anyone but me. Starving myself as punishment because the scale went up a few pounds or because I’m angry or depressed only continues to hurt me.  Not any other people will be affected by the food I eat. Just me and me alone.

My ex-bf and I were speaking recently and he asked about my eating and asked if I was weighing myself often and  then threatened to take the scale from my kitchen and take it to his house if weighing myself was the reason I wasn’t eating. He’s scared for me.  I know that.

So anyway after this last surgery I haven’t been prancing around in front of the mirror much, but I had noticed how my right hip had been cut into, leaving a very normal hip that is in line size wise with my left.  It used to be was I off balance, now I’m not.  And last week or something I was on the couch and I put my right leg on top of my left.  There was this bony thing on my knee and I rubbed it and massaged it.  Didn’t hurt.  I pulled up my pajama pants and realized it was my KNEECAP.  My legs are fat, my knees have never been that exposed.  Holy wow.  I didn’t go stare naked in front of the mirror, but the other night I was lying in bed freaking out because my right ‘hip’ is sticking out more than the left.  So at my hip checkup appointment I said something about it to my surgeon who very cutely told me it was not abnormal to easily feel hip bones.  I mean…hip bones.  Really? Between that stuff and then watching this gut wrenching show about these people over 600 pounds I thought how come as a whole I don’t look any smaller?

In theory if I’ve noticed the things like protruding bones then I surely must look different.  Most of my clothes are too large. So why have I been so reluctant to set any kind of weight goals? Seriously, If I continue as I have been I’ll lose slowly but if I lose 5 pounds a month even that’s 60 pounds in a years time.  The only difference is I plan to lose that, it won’t be a shock and all I really have to do is be a little more conscientious about food choices and make sure I’m eating enough and hydrated enough.  Duh.  This isn’t rocket science and it’s totally doable.  So…I’ll do it.  Even though I think I’ll look weird that small.  Hard to fathom.

And also…how the hell is my brains image of my body as a whole so twisted that when I was heavier I thought I was small but now that I’m a lot smaller in the last year I think I’m larger.  That’s just fucked up.  Even more messed up is that after the discussion about him removing the scale, I realized that my ex bf and I are the same weight and he isn’t fat…yea so there’s that.

Well thanks for reading.  About time for bed. I’m really tired today and plan to go to the office finally tomorrow (the times previous I wanted to go we ended up having rain or snow/ice…I’m not interested in falling on an icy patch and breaking a bone or popping out my antibiotic hip spacer. No thanks. No more surgeries until I’m healed and have a clean bill of health.

This picture was taken about 10 days post op after the bleeding had begun, picture taken to send to medical care team to assess me for emergency treatment. I was lying on my left side with my right leg slightly bent.  the unexpected indention at the 2 o’clock position is where my natural hip makes the bend to my thigh. Repeated trauma and surgery and openings have caused issues. I was also extremely swollen (because of the hematoma) so that exaggerated the indent. Post Op with antibiotic spacer implanted

About limpalongwithme

Quasi geek, social butterfly, information sponge, lover of spas and I spend my days dealing with major chronic back and hip pain. Recently diagnosed with dysplastic hips as a grown woman and I need a place to talk about it as I try to move forward.
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