pain, you just have to fight through it.

kate. twenty five. this is a blog about my life with ehlers-danlos syndrome hypermobility type.

[chronicallyinjured]

four weeks post-op (almost)

I was able to start at physical therapy this week. I’m not allowed to do much because I’m limited in both weight bearing and range of motion. I’m working with a new PT. I’m not sure how I feel about her yet. She seems eager to help me but doesn’t quite understand my limitations. She claims to have worked with EDS patients before. However she said to me that “they got tired of having surgeries so they decided to do acupuncture instead” which is fine but that doesn’t treat instability and that’s the reason I’ve had so many surgeries. I’ve only seen her twice but she seems to really want to push me when I need the exact opposite. My Ortho’s protocol is literally three sentences long because he rarely does this surgery so he doesn’t have a real protocol. It says something about me being 50% weight bearing this week and off crutches by week eight. I’ve been on crutches for over 18 months...I’m not sure why she thinks I’ll magically be off them just because a piece of paper says I should be. Anyway, Tuesday (10/8) was my evaluation so I didn’t have any real exercises but Thursday I did. She also added some for my ankles, knee, and core because she’s freaked out about my hypermobility. She said my left kneecap is “floating and sitting too high.” Since Thursday (10/10), I’ve had increased pain in my hip. I didn’t fall asleep until 5am because the pain was radiating down my leg and my hip was spasming on & off. I haven’t been able to weight bear much on my leg since then so I’m not sure what happened. I’m hoping the pain settles down soon.

On Wednesday (10/9), I had a hearing for disability. I got approved while I was there. Usually people have to wait 6-12 weeks for a decision. Apparently, my case my strong enough to warrant a decision on the bench. All I did was tell the judge about my past surgeries and my ongoing struggle with hip instability. She let my lawyer ask me one question but didn’t even let the vocational expert talk before saying she had enough information to make her decision. I hate that it had to come down to this but I am very grateful that I got approved without much hassle. I’m not sure what I would have done if I was denied because my hip is a mess and I’m going to need knee surgery again and it’s just nice to have this while my body is getting sorted out.

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If you asked me three years ago if this is where I would be, I wouldn’t have believed you.

These past three years have been so hard on me physically and mentally. The last thing I ever expected was to be out of work for two years. I never imagined I would lose my dad so early in life. I didn’t think I’d be capable of handling everything that’s been thrown at me.

I feel like people think it’s fun or cool to not work but I hate it. I feel useless. My weeks consist of doctors appointments so I’m not just sitting around doing nothing. Being chronically ill is basically a full-time job. Regardless, I feel like shit for not being able to work.

I did recently graduate from college and now I want to go into an advanced nursing program. Everyone keeps asking me when I’m going to start or when I’m going to get a job again. I DON’T KNOW. I have goals. But I’ve been on crutches for over 18 months. I had three surgeons tell me the surgery I got two weeks ago was not a guarantee. We don’t know if it’s going to work. How am I supposed to plan my life around unknowns? Right now, I’m taking it weeks at a time. I potentially need another hip surgery and knee surgery. I’m being realistic. I’m not getting my hopes up only to be disappointed.

I saw my pain management doctor today and he’s great. He wants me to not let pain hold me back and succeed in life. I love his attitude. This has been my attitude for years. But damn he made me feel like shit today. I’m two weeks post-op from a surgery that has an unknown outcome. He kept telling me that I needed to start applying to school and to do something with my life.

I AM TRYING.

I feel horrible that I had to apply for disability. That’s the last thing I ever wanted to do. I’m 25!! I don’t want to sit around and do nothing. I want to be out in the world and contribute to society. I hate that this is where I am. I don’t like talking about my future right now because I’m not certain what it holds. I don’t want people to think I’m okay with where I am because this is not want I want but this is the only choice I have.

EDS has taken so much from me.

[chronicallyinjured]

two weeks post-op // first post-op appointment

I saw my Ortho today for my first post-op appointment. Everything is going as planned! I’m allowed to toe-touch weight bear which is great because non-weight bearing was killing my shoulders. My brace is locked at 30 degrees so I can’t straighten my hip all the way. My Ortho doesn’t want my hip to be able to go through normal ROM because, before surgery, I felt the most unstable when my hip was straight.

After my last surgery, I lost feeling in the outer half of my thigh. With this surgery, I’ve lost feeling on the inner half of my thigh. My doctor thinks the feeling will come back but I don’t think it will based on the fact that I still don’t have the feeling back from my last surgery. The nerve pain from it sucks.

Surprisingly, I start physical therapy on Tuesday. I didn’t think I’d start until at least 6 weeks post-op but, because I can’t engage my quads or do a leg lift, my Ortho wants me to start as soon as possible. I won’t be able to do much because I’m not allowed to take my brace off or weight bear. I’m sure my PT will be excited to see me.

My left knee continues to be a pain in the ass. My kneecap is unstable and constantly subluxing. I’ve had a few full dislocations. It also feels like my WHOLE knee is unstable. It does this slide and pop thing a few times a day that is super painful. I’ve been so dependent on this knee for so long that it isn’t surprising but it is frustrating.

I have plans to fly to Chicago in a month to see my favorite band. My Ortho wasn’t too happy to hear about this but he knows about my passion. When I see him again in 4 weeks, he will give me the final approval.

Also, my potassium is back up into normal range at 3.8. I’m now taking a potassium pill every morning. I did give my doctor a hard time about the potassium infusion since it hurt like hell...he said it wasn’t him that ordered it, it was one of his residents so I couldn’t blame him.

Anyway, I see my pain management doctor on Thursday. Hopefully he does some medication adjustments. I have a 24 hour pH test on the 14th then GI on the 21st. Sleep medicine on the 25th. Ortho on the 29th. PCP on the 31st.

[chronicallyinjured]

ONE WEEK POST-OP

I can’t believe I’m already one week post-op! Pain is pretty minimal when I’m laying down. I have been having a lot of popping and catching and feeling unstable but, hopefully, that’s just due to me not being able to engage my muscles fully. I also have moments of pain/pressure that takes my breath away when I’m standing and my leg moves in a weird way but it only lasts for a few seconds. I see my Ortho (Tuesday) and pain management (Thursday) doctors next week. I’m wondering when I start PT. I definitely asked him before surgery but forgot what he said. He’s being really conservative so I don’t think it will be until I’m 6-8 weeks post-op.

[chronicallyinjured]

Post-op update!

So I had my 4th hip surgery on Monday (9/16). I had a right hip capsular reconstruction with dermal graft. It took about 3 hours. I did not get sick from anesthesia but I did have an extremely hard time waking up from it. I was in a lot of pain and ended up crying for an hour before I was given the last dose of pain meds. I’ve have 5 surgeries at this hospital and this was the only bad experience I had with the PACU nurses. The alarm kept going off because I wasn’t breathing enough yet they were trying to make me leave. My Ortho admitted me for the night & I was supposed to leave yesterday (Tuesday) at 7am but just as I was setting up my ride home, the nurse came in and told me my potassium dropped. It was 3.5 at pre-op testing and now it was 2.9. My doctor ordered potassium pills then I had to wait two hours for my blood to be re-drawn. It had gone up to 3.1 but he didn’t feel comfortable sending me home so I got IV potassium. It really sucked. My arm felt like it was on fire. In the end, my potassium came back up to 3.5 so I was allowed to go home at 7pm. My hip pain isn’t horrible unless I try to move. I was on 4mg Dilaudid every 4 hours yesterday and now I’m on half a Vicodin as needed. I can’t activate my quads right now so it’s hard to move. My whole thigh is numb. I’m NWB for two months and my brace is locked at 30 degrees so my hip heals a bit stiff.

I emailed my Cardio about my potassium dropping because one of my POTS medications can cause that and he is giving me daily potassium pills to take, though, he said that it shouldn’t have dropped that quickly due to the med. I’ll have my blood redrawn again in a week.

[chronicallyinjured]

Hip surgery number four

I haven’t updated this blog regularly but I’ve decided to use it to post about my upcoming surgery because there are no first hand experiences online.

On Monday, September 16th, I will be having an open right hip capsular reconstruction with dermal matrix graft or allograft. My surgeon will decide in the OR which option is best. According to his PA, I will be having a nerve block but I’ve never had one done with him so we will see what happens with that. It’s supposed to be an outpatient procedure but my Ortho said staying overnight could be a possibility. This is a three hour surgery so the anesthesia side effects are going to be bad for me. I will be non-weightbearing and in a hip brace for at least two months.

I have mixed feelings about this surgery. I saw three doctors before making this decision but no one is sure this is going to work. It was either this or a PAO. I don’t have hip dysplasia so getting a PAO would be a huge risk and I’m just not willing to take it right now. At least with the capsule reconstruction, it doesn’t change my anatomy so, if it fails, I’m kinda back to where I started. I still have the option to do the PAO.

Am I ready for this surgery? Physically....uhhh maybe. My body is really struggling after being on crutches for 18 months. My left kneecap subluxes/dislocates again and my whole left knee feels unstable. Mentally?? Hell no. I’ve had way too much time to think about this surgery. I trust my surgeon 100% but not knowing the outcome is hard.

[chronicallyinjured]

I’ve been on crutches for over ten months. It’s so hard. My doctors aren’t sure what to do. I’m getting prolotherapy injections. If they don’t work, my Ortho is extremely hesitant to do another surgery. I physically cannot walk more than 100 feet without crutches so I’m not sure what I will do if the injections fail. There’s no one to get a second opinion from. I just feel so stuck.

[chronicallyinjured]

Hip update.

I saw my Ortho last week. Not a great appointment. I’ve been on crutches for 8 months. I know I’m not going to get better. He doesn’t want to do anything dramatic until we’ve tried everything over and over which I understand but it’s frustrating. So I’m getting some more injections with my pain management doctor (I see him later this week) then I see my Ortho again on November 8th. He wants me to still continue PT but I’m pretty sure my insurance will not pay anymore (currently waiting for more visits to be approved). If all this fails, I will be having more surgery. He doesn’t want to even start planning surgery until January but I would like to have it scheduled for then because my school schedule for next semester is going to be difficult.

[chronicallyinjured]

It’s been so long since I’ve posted on here. I’ve had a lot happen. I finally saw a cardiologist and got diagnosed with POTS. I was put on several medications to control my symptoms which has been pretty helpful. Nothing has helped with my fatigue though. My doctor was hoping that the meds would improve it but we haven’t had any luck yet. At least my migraines are under control now unless I’m stressed (which is all the damn time) but I only get one now when I clench my jaw throughout the day. It’s a habit I’m trying to stop.

Unfortunately, I’ve been on crutches for eight months. After my hip scope in February, I was doing really well. I had my labrum repaired along with capsular plication. At about 3 months post-op, I started regressing. I went from one crutch occasionally to having to use two all the time. I cannot leave the house without crutches. I had a repeat MRI which didn’t show anything abnormal and another cortisone injection to help with inflammation but it didn’t help. We think I am dealing with instability likely because of the 3 surgeries + EDS. I’m not sure what’s going to happen next. I see my doctor on Thursday. I haven’t been able to work since December and it’s really killing me. I never imagined I wouldn’t be able to work for this long. I didn’t think my recovery would go like this. It’s so frustrating.

[chronicallyinjured]

Fate whispers to the warrior,

‘You cannot withstand the storm.’ The warrior whispers back, 'I am the storm.’

[chronicallyinjured]

Hip surgery #3 is scheduled for Monday.

I’ve been out of work since December and won’t work again until the summer, most likely.

I’m having a labral repair, oesteoplasty, and capsular plication. Overall, I’ll be on crutches and in a brace for two months.

[chronicallyinjured]

Sorry it took me so long to respond to this. I had no choice but to see this doctor because I got hurt at work. He was a worker’s compensation doctor and obviously had made his mind up about me faking my injury. I reported him to my lawyer and everything that happened in my appts was part of my testimony. Even his MAs knew about his behavior because I mentioned being nervous about seeing him and they acknowledged that he makes other people feel that way. I never thought of reporting him but I definitely will once I have his name again. @rosered3 @dayquilnyquil

[chronicallyinjured]

He doesn't do adjustments on me. I get e-stim and hydromasssage along with some laser therapy.

[chronicallyinjured]

Got my cortisone injection today. Really hoping it gives me some relief until I'm able to have surgery 😓

[chronicallyinjured]

[chronicallyinjured]

Good news: i fiinally got put back on Topamax for my migraines 🙌🏼 hopefully this means I will stop getting them 3-4 times a week. bad news: I can't have surgery for my hip anytime soon but I am getting a cortisone injection to help with my pain because it's been unbearable lately. I feel like I'm being overdramatic about it but hip pain sucks. I can't get comfortable no matter what and the pain never gets better. I just wanna have surgery and get it over with so I can start doing the things I love again but it's definitely not happening anytime soon. My hearing is in August. I don't even know what's gonna happen after that.

[chronicallyinjured]

All these appointments next week plus going to the Chiro 3 days a week. Going to the doctor is so mentally and physically exhausting.