Category: hip

Post-injection life and therapy

Posted on by Grayson

My ortho told me not to get cocky. I’m really trying not to get cocky. I know that the kenalog takes 3-5 days to take full effect… but it also doesn’t kill me to go up the stairs anymore.

Something I’ve more or less dealt with my entire life that just got worse recently isn’t a thing at the moment.

I seriously don’t know how to handle this.

Don’t get me wrong – I was sore after the anesthesia wore off after the injection. I was sore yesterday morning (it was also snowing so maybe that?). Today I feel a lot better.

Ironically for just having gotten steroids injected, I’m really tired today.

Yesterday I started therapy again. We agreed that I need to learn some of the more basic social skills, namely how to set different kinds of boundaries. We also agreed that it would be beneficial for me to figure out what types of relationships I want with those in my life and talk with the people about them. I don’t know how real families work, so talking with my dad and his family and figuring out what we want our interactions to be would be good. I also need to process my emotions related to various events in my childhood and this situation with my mother who still is causing problems.

The nice thing is that my antidepressants are working well. As helpful as I know medicine is, there is still a part of me that was concerned to go on them at all. Growing up in a household that loved learning about medical care but thought it wasn’t okay to use it can be very confusing.

I’m spending more time with friends and family lately. Having my own car is helping with that for sure, but I think I’m also allowing myself to finally really be my own person. I also am trying to make up for some lost time… I feel as though I’ve needed so much more from my friends in the last year than I’ve given, though I know a lot of my friends don’t agree. Maybe it’s a little guilt over needing so much with the wedding.

These are my people!

My theme this month is all about healing, and I think I’m off to a great start!

 

Bursa injections are hella weird

Posted on by Grayson

This morning, I had my first big procedure due to my Still’s… Yeah, I’m a little behind. Anyway, if you remember from my last post, docs think the biggest issue in my hip is not the torn labrum but snapping tendon syndrome – specifically on the iliopsoas bursa aka in your groin.

Honestly, looking at that graphic, it makes sense that my left side would have a problem seeing as how that’s attached to the part of my back that has scoliosis. Interesting…

The injection was hella weird/awkward/wtf just happened.

Since the shot was into my groin, I did a little landscaping yesterday in preparation. I’m glad I did too because they brought out that lovely blue sticky surgical sheet.

First, got to experience a sonogram. I didn’t realize how weird that was going to be. My sister is due with her second kiddo at the end of the month, and here I am getting a sonogram! They could very obviously see the snapping in my hip as I did some extensions, which is good. They also were able to catch it from a couple of angles which was helpful. They got prepped and I got the lovely orange cleaning solution.

First, they went over stuff with me. They injected a numbing medication to help with the pain from the actual injection… then got that big needle all the way down to the bursa for the steroid and anesthetic mix.

One of the worst parts about it all was trying to move immediately after the injection. T had to help me put my pants on because it just was too uncomfortable to bend over with all the fluid now in my hip.

Side note: I’m really glad they required a driver because that was not fun and I definitely needed his help.

I got home and immediately did the things that before were hurting to see how much the injection helped. The biggest change got my 8 down to a 2 on the pain scale! Most everything was then in the 2-3 range which was so nice. I was able to crawl with Gus Gus with no pain.

MOM EVEN GAVE ME EXTRA TREEAAATTTSSS

Sitting in my chair at work without an angry hip has been really nice too. I’m trying not to overdo it, but I have done more flights of stairs than I normally do here at work.

I am so grateful to have had so many people be supportive over this whole thing. I know it’s not a hip replacement and it isn’t surgery, but even this was scary. It’s hard to be in a place where I am relying more and more on the world of medicine to be okay. Part of hating that is growing up without proper medical care. Another part is probably ego-related… and yet another is likely due to the fact that it means admitting that I’m not doing as well as it often seems to the outside world, that my body on the inside is more torn up and painful than I like to talk about.

Underneath applies to my innards right?

I’ve gotten through this and if I have to get more I’ll be okay with it as long as T is around, friends send me good vibes, and I’ve got my Batman underoos!

Post surgical consult hoorays and blahs

Posted on by Grayson

While I have the labral tear in my left hip, I also have bursitis, a slight CAM impingement (on both sides), and a snapping iliopsoas tendon. Basically, my inner and outer bursa in my hip are both unhappy. My left hip has always been worse, so the fact there is more wrong isn’t necessarily a huge surprise but it just seems like a lot to have wrong.

I wish it was snapping turtle syndrome

One of the perks of my new job in healthcare is that docs are treating me more and more like I know what I’m doing or talking about. The doc gave me homework – to look up an article on injections into the ilopsoas bursa and how that relieves the snapping tendon pain.

As of right now, the plan is to have one (possibly more) injection into this inner bursa and see how that affects the pain. In about 80% of cases, this eases and ends the pain from the tendon at least. There are so many things going on that it’s hard to pinpoint what is causing the worst problems. The first injection is scheduled for Monday at 9am and we’ll take it from there.

The nice thing is that the doc is super nice. Two of the docs I work with in pediatrics also work in sports med, so I had heard good things already about this guy. I was a little out of it from being so worried going into things, which was also weird just because I wasn’t anxious as I normally am thanks to my new meds. Thankfully, it seems like they’re a little more used to that than I am.

Is it possible that surgery will still be in my future? Definitely. The CAM impingement makes it more likely that I’ll need a little more attention directed at my hips in the future. The fact that I’ve got tendonitis/bursitis kinds of issues doesn’t help. If the injections don’t clear up the pain, then I’ll be looking potentially at surgery to lengthen that tendon… which will cause more instability in my hips than the impingement does. It’s not the best option, so hopefully it doesn’t come to that. On the other hand, if that happens it’d give the doc time to clear up the labral tear as well.

I have to say though I’m a little let down after today’s appointment. Everything went well and all, but I was ready for more action I think that it feels like we’re taking. I’ll probably feel differently once the giant needle hits my hip Monday morning though!

If you’ve got a rare disease, make sure to join me on twitter using the hashtags #chroniclife and #raredisease on Saturday! Learn more here.

Antidepressant update: day five

Posted on by Grayson

When this posts, I’ll be freaking out in a surgeon’s office over the whole torn labrum issue… so let’s talk about happy things!

I started my antidepressant Friday following a doctor appointment on Thursday… in the middle of having food poisoning, but no biggie, right?

As much as I felt awful from that all weekend, I noticed that I’ve laughed more – and not just more, but more deeply. I’ve felt more in the moment and my brain has been able to function quick enough to not only get T’s punny jokes right away but to also make my own.

Seriously, so nice.

I also slept in my bed for the first time in a WEEK Sunday night. My hip is a little less happy today because of it, but it was so worth it.

Playing with the guinea pigs was easier and I got quite a bit done because I had motivation. Part of that was likely due to the fact that I’ve eaten more than two bananas now that I’m recovering.

T and I also are consolidating finances so we can look at getting a house next year-ish. I was actually surprised what a good position we were in to get everything moved around the right way to pay off. It’s pretty awesome… plus now I can continue my HGTV obsession because it’ll mean something in a while.

I do still feel like I’m not up to speed at work.

But I’m being challenged in a great way and I can handle that. It just means I need to work a little harder at this, and with the mental fog lifted a little bit, I think that’s doable. Plus I’m working on some amazing projects and helping to keep patients more at the center of things which I LOVE.

For now, I’m off to be more anxious about my surgery consult. See ya on the flipside!

Still unpacking from Thursday’s rheum appt

Posted on by Grayson

I feel like I’m still unpacking from my rheumatologist appointment on Thursday.

She wants to me live where stairs are not a thing.

She says yoga is right out for now, because it’s balancing your own body weight and right now my joints and muscles can’t handle it. Instead, back to the water with me. Or Tai Chi, but let’s face it – I do not have the balance for that.

I’m frustrated because I knew I was not doing awesomely, but I didn’t realize I was doing so poorly I guess? It’s winter in Wisconsin, so I’m generally worse off. Maybe that’s part of it.

I’m starting to look at cars because taking the bus is getting to be a lot. It’s really not that bad, but when you throw on top the idea that we’re looking at hip surgery? People don’t even get up for younger gals with canes… will they do so with crutches? I have my doubts sadly.

Speaking of, I’ve called to see where in the triage process I am with the surgeon. He got back to clinic last week, so he should be making a decision on my case. From the docs I work with, it sounds like the normal process is to inject the hip first to see if that eases the pain, so we’ll see what happens. I’m guessing that would be a part of the surgical consult.

I helped a patient this morning talk about joint injections, but I’ve never had one. I’m not excited about it. But I also recognize that they serve a purpose.

Oy.

I honestly don’t want to think anymore about being sick today. It’s a bummer.

If you want to learn more about the #ChronicLife, go check out that tag on Twitter. Hurt Blogger (aka Britt) is live blogging her illness adventures today and tomorrow, and a bunch of us have joined in as well.

New rheumatologist: What would you bring up?

Posted on by Grayson

It’s not that I hate my old doc, but it’s very obvious that the office is too busy to really dedicate time to so many patients. It also shows in their lack of attention to detail (refill issues, lab results taking a week to get back to me instead of the three days, etc). They’re very sweet people and I love that the rheumy teaches, but the teaching is getting in the way of my care at this point. I gotta do what’s best for me and peace out.

I see my new rheumy Thursday morning which means it’s time for me to start obsessing as I usually do before appointments, about what I’m going to say in the short time I see the doc. This time, I’m scheduled for a whole hour, which will be longer than I’ve sat with one of my docs in a long time.

I obviously am going to have to bring up the fact that I don’t have any records from my childhood, since I didn’t get to see doctors. I want to bring up frustrations with my current rheumy team and the fact that they’re not treating me for SJIA/Still’s. I want to start talking about other meds. Cimzia isn’t awful, but I’ve also not done my shot for like a month and not felt any real difference other than not feeling quite as flu-like (I’ll do it tonight).

I’m sure that part of the issue with that too though is the torn labrum. I would think it is distracting my body more, even with the pain lesser than it was a month ago when this all started. It still is limiting my activity and causing pain. My quality of life is still lesser than it should be. Perhaps I can discuss surgery and thoughts about that with the new doc. Even though it’s feeling better, the fact that it’s still causing problems AND has always been an awful joint for me makes me feel like surgery would be best.

I also am going to start working on getting my records so that I can go through and correct them… and so I can have my x-rays and scans for fun decorations.

I have problems.

But seriously though, how cool is it to have pictures essentially of your insides, of what makes you move and function?

Anyway.

What are some things that you’ve brought up to new specialists? What is the most important to bring up in your short time? Is listing your expectations a good idea, or too bossy?

MRI Fun, Part Deux

Posted on by Grayson

So it took my rheumatologist A WEEK to get back to me with my MRI results… Any test in the health system I use (and now work at, so I know what’s up too) is supposed to be processed and presented to the patient within three days. Not that it ever happens with this doc…

That’s beside the point (kind of at least).

Anyway, I do NOT have avascular necrosis (AVN). Hooray!

I do, though, have a tear in my labrum.

This explains why wearing underwear hurts like a bitttcchhhhh.

She gave me the choice between PT and surgery. Seeing as I work with a couple of sports med docs over here in peds, I opted to ask for the surgical consult and talk it over with one of them… who suggested that surgery is THE way to go… as have the handful of other patients that contacted me yesterday. One reason for that is that there could be outlying issues with my hip that have caused the tear (as is very common with autoimmune arthritis patients) and they can see that when they go in.

My rheumy was not happy with my decision, but it’s also not her body. And, given the fact that they have my diagnosis listed incorrectly in the computer among other issues, I don’t necessarily care as much what she thinks.

This surgery is a lot less frightening than the AVN one for a lot of reasons, but one being that it is really minimally invasive. It’ll probably be a while before I can get in, but I think this is the way to go. My left hip has always been a problem joint for me and I really believe that this can help clear up a lot of those problems. At the very least, it’ll help me eventually get off these narcotics I’ve been taking. I have to say, though, Zohydro is amazing. I can function on them mentally, whereas when I’ve been on the oxy drugs in the past, I just want to sleep and throw up. I’m back to feeling like an intelligent person, and that at least has been very helpful.

I probably would not have gotten Zohydro if it weren’t for a very kind doctor that I saw at urgent care the Sunday after this pain started (Dec 21). He really paid attention to my allergies and wanted to give me something I would have a lower chance of reacting poorly to. He really took the time to go through everything with me, came over to the pharmacy with us, etc. And he was a newer doc! Younger docs tend to be more afraid of prescribing pain pills, so I was glad to see that he wasn’t. Getting them filled at Walgreens was extremely easy as well and that was great because I was in so much pain and so tired. I honestly feel very blessed for how things went down that day.

When my rheumy refilled my Zohydro, though, the pharmacist at Walgreens was a total bitch. She asked questions in a way that didn’t make sense to me, blew off my questions – even interrupting me as I was asking them, and had me stand up at the counter for 15 minutes with my cane while I was visibly in pain. She treated me like a pill seeker, and I remembered why I normally don’t go to Walgreens. However, my insurance doesn’t cover this medication and Walgreens has a discount program, so… I was kind of stuck… though next time, I may not go to the one by our apartment.

Want to learn more about the surgery? Check out Joan’s blog, Life with a Flare, or Kenzie’s blog, Life According to Kenz. They’ve been so helpful!