“Well, really the only thing that is going to resolve your hip pain is a total hip replacement.”
The hip surgeon I had just met stood with his arms crossed and leaned back against the counter behind him in the exam room. He was a charismatic man but quick to the point. He had looked at my recent X-rays of my right hip which had been in pain for months, and I had just finished explaining my symptoms.
I sat on the exam table across from him, perplexed. A hip replacement? That wasn’t what I was expecting to hear. Yeah, my hip pain had been so bad the last few months that I could barely walk longer than a mile or stand for several minutes, but I had thought it would be a muscle issue of some kind that could be treated with physical therapy. Although, I did start to think that less now since I had just finished 6 weeks of physical therapy that seemed to only make my pain worse. But a hip replacement?
It just didn’t sound real to me. For me? A (at the time) 28 year old? When you hear hip replacement, you think of someone much older than that.
But apparently, despite my age, a hip replacement really is the only fix to my hip dysplasia according to my doctor. I’ve had this hip diagnosis all my life, a byproduct of my rare disease, but as the years have worn on, it’s gradually worsened. My hip is just that far gone. Sure, I could try hip injections to try to mitigate the pain, but that would only be a temporary fix. Like a band-aid.
I asked this new doctor about hip preservation surgery. I had discovered that as a treatment option when researching hip dysplasia. He had to provide me a referral to a surgeon who specializes in that. Obviously I wanted to explore any other possible options before turning to a total hip replacement.
Not more than 10 minutes after the doctor walked in the door, I was already sent out with my referral in hand.
After bouncing to the referred pediatric orthopedic surgeon and getting an MRI, it was final. A total hip replacement is the only real solution. My hip has deteriorated so much that they can’t even operate to try to preserve it.
When would I need to get this hip replacement? Well, until I can no longer bear the pain. That answer is almost word for word from the last surgeon I saw.
How about that? I’ve always known I would encounter some issues with my joints in the future because of CLOVES, but never would I have guessed that I would need to get a hip replacement in my 30’s. For now, the pain is bearable after stopping physical therapy, and I still am continuing some of the physical therapy stretches that didn’t seem to agitate my hip. But I know my hip isn’t getting any better the older that I get. It’s only a matter of time.
This past year has really reminded me how so very unpredictable CLOVES can be. I could be relatively stable for a few years and then boom–hip pain that leads to news that I will need a hip replacement soon. The last few years have been so busy with my clinical drug trial and worrying about managing the lipomatous tissue on my back that I just didn’t see this coming. And on top of all this, I’m back in physical therapy to treat the pain in my knee on my other leg from patellofemoral pain syndrome (another byproduct of my rare disease).
If there is one thing that is consistent about CLOVES, it’s that the ups and downs can really take you by surprise even if you thought you were prepared for them.
There is just so much more to a CLOVES diagnosis than meets the eye. Sure, I look different and people stare, but strangers on the street don’t have any idea what it’s like to manage the rare disease that causes me to look different.
We have to live with pain. We have to go through treatment, surgeries, and see doctors all the time. We have multiple symptoms that need to be monitored and managed on a regular basis. There are so few medications available to treat CLOVES and no guarantee that any of them will even work.
That is just life with a rare disease like mine. It’s a lot of weight to carry. And it can be tiring carrying all of that weight. “Tired” is a word that immediately comes to mind when thinking of managing my rare disease over the last year, and for more reasons than just what I’ve shared so far.
Sometimes saying “I’m tired” is the only thing I can really say about my rare disease. Managing my pain is tiring. Bouncing to three different doctors to find a treatment for that pain is tiring. Six weeks of physical therapy is tiring as is returning to physical therapy for a different issue. Mentally wrapping my head around the news that I will need a hip replacement in my 30’s is tiring. Getting ultrasounds and multiple MRI’s to monitor my disease progression is tiring. Thinking about my decision to stay on my clinical drug trial or try the new FDA-approved medication and all of its side effects is tiring.
Managing a disease with so many ups and downs can do that to you, and knowing that I have the rest of my life to live through countless more ups and downs is an even more exhausting thought.
Reflecting on this last year just really reminds me how tired I can really get from this rare disease.
PeaceLoveHeal 