Long time readers here at The Mad Reviewer are probably aware that I’ve been dealing with chronic back pain for nearly five years now. For the first time in five years, I have good news on that front.
After years of being called a liar, a drug-seeker and an attention whore by doctors I finally, finally have a diagnosis. My pain is not all in my head. Rather, I have what’s known as benign Hypermobility Syndrome (for those of you looking for more info, MedicineNet does a great job of explaining it). Now of course having loose ligaments doesn’t cause pain in and of itself but in my case Hypermobility Syndrome allowed me to bend so far backward that I actually slightly damaged the right facet on my L5 vertebra. This in turn caused the muscles of my lower back to tense up, causing the initial lower back pain. Because those muscles were tense, the muscles of my upper back also tensed up, causing additional pain to the point where everything from the small of my back to between my scapulae was in intense pain constantly. On a scale of 1-10 with ten being the worst pain imaginable, I would put my back pain at a 6-8 on an average day (slightly less painful than getting dry socket when I had my wisdom teeth out but more painful than my adult tonsillectomy).
Obviously, being in constant pain and being called a faker by literally dozens of doctors did nothing to help my situation. I became depressed and generally hopeless. I had hoped that moving to the city and getting out of my hellish small town would improve things but that seemed not to be the case. The pain kept getting worse and I was getting even more miserable.
Finally, in April 2016 I was diagnosed with benign Hypermobility Syndrome by a specialist who actually has the same condition (and passed it on to both of his daughters). He recommended physiotherapy, which I did religiously for four months with no improvements. All the while, my new family physician and I were trying different anti-inflammatories and other non-narcotic pain management drugs in an attempt to at least take the edge off for me. After my third round of physiotherapy failed and my pain became even worse, I was in a dark place mentally. Depressed, wanting the pain to just end. And finally, it did.
I have been largely pain-free since March 23, 2017 and I can’t tell you how emotional I am right now typing this sentence. For years I was called a liar and a faker and even though I had a diagnosis for almost a full year, no course of treatment seemed to be working. Until my doctor suggested yet another anti-inflammatory medication and I gave it a go. It took a week to really kick in but my daily pain levels since March 23 have been as low as zero and as high as six. That’s a far cry from a daily pain level of 6-8 with absolutely no zero days, let me tell you!
Living without pain has been an odd adjustment. I’m ridiculously relieved that I finally have a non-addictive effective treatment that takes my daily pain level down to zero. It’s hard to believe but after five years of being in constant pain I couldn’t remember what it was like to not be in pain. Even though I’d only been in pain for less than a quarter of my life, pain had robbed me of the ability to remember my normal life before my genetics and my body betrayed me. So now that I wake up without pain and go to bed with no pain, I feel very odd. When I was in pain it always occupied a corner of my mind but now that it’s gone I have to learn how to focus 100% on what I’m currently doing instead of always being aware of my back. To say these past two months have been a bit of an adjustment period is really an understatement.
I feel like I finally have my life back now. That I have the ability to be who I’ve always wanted to be. That’s why I’m still living in the city and am actually attending university this summer (and into the fall/winter terms) now in order to get a Bachelor of Kinesiology in Exercise and Sport Studies. My eventual goal is to attend medical school and become a physician so I can help patients like myself get the treatment they deserve. And if that doesn’t work out, I hope to get a Masters in Physical Therapy so I can help people cope with injuries, aging and genetic conditions like mine.
For the first time in five years, I feel like I can finally make some of my dreams come true. Being largely pain free has given me my life back and I hope to make something out of it. Not everyone with chronic pain is as lucky as I have been.
I’m so angry right now I don’t know whether I want to scream or cry.
The anger seems to rise up in my throat as my hands shake and my heart races. I am not the sort of person that experiences blinding rage very often so it’s almost terrifying to experience it now. But what I’m feeling at the moment is more than just anger. It’s the five stages of grief all at once.
I’ve discussed my chronic back pain at length in the past. One thing I never metioned was how sometimes I get a shooting pain down my right leg that makes it go quite stiff, giving me a visible (and painful) limp. I never mentioned it because it only happened once or twice a year. But slowly, as the years have gone by, it became more and more frequent to the point where this January it began happening once or twice a week. So although I had accepted my chronic back pain, I went through the five stages of grief once again as I mourned the possible loss of my mobility. This time the depression stage was much shorter but the anger lasted almost twice as long as it had when I realized my back pain was only getting worse.
I was so angry that not only was my back pain still a problem but that I was also experiencing pain in my leg that limited my life even more. While we as a society have made quite a bit of progress when it comes to physical disabilities we’re still not perfect and my occasional limping has made that painfully clear. Not only did the pain make me angry, people’s reactions to me did as well. It’s hard to go out to the mall and get stared at by almost everyone because you’re an otherwise physically normal young woman with an obvious limp. It’s hard to go from nearly having to fight salespeople off in every store you enter to being left alone (and sometimes actively avoided) by everyone. But I digress.
So why am I angry now? I’ve gone through the five stages of grief for my back and my leg. Well, two days ago I had an appointment with a physiatrist (physicians who “treat a wide variety of medical conditions affecting the brain, spinal cord, nerves, bones, joints, ligaments, muscles, and tendons“). Instead of acting like all of the specialists I’ve seen to date (i.e. immediately dismissing me as “too young to be in pain without any obvious physical defects”) he took the time to examine me and ask me questions about my medical and family history. And because of this physical examination, the questions he asked and the MRI I had done three years ago he was able to diagnose me within fifteen minutes.
I have been in constant pain for nearly five years. I’ve seen specialist after specialist, sometimes waiting for up to a year to book an appointment that lasted ten minutes and ended with the specialist accusing me of lying or seeking drugs. And the worst part? At least half of those specialists should have come to the same conclusion as my physiatrist given my medical and family history.
Essentially I, like 10% of the population, have hypermobile joints. I have naturally loose ligaments and so my joints extend beyond the normal range of motion. For a lot of hypermobile people this isn’t really a problem. However, in my case I seem to have extended my back too far and caused stress on a vertebra in my lower spine. This caused the muscles in my lower back to tense up to compensate for the stress on this vertebra, which in turn caused the muscles in my upper back to tense up to compensate for that. And as I had to give up the sports I loved due to the pain, the pain got worse as I lost core strength and my muscles had to work even harder to hold things together. The stress seems to be worse on one side of the vertebra, which caused the intense shooting pain that runs down my right leg.
The cure for this? Targeted physiotherapy. The physiotherapy I had before, shortly after the pain started, only exacerbated my problems as the physiotherapist had me doing exercises that forced me to move my joints beyond the normal range of motion and put additional stress on them instead of stabilizing them. Basically, I need to go see a physiotherapist with experience treating hypermobile people who will determine what exercises I should be doing on my own time and that’s it. It won’t happen overnight and I’ll always need to do them, but the exercises should essentially cure me of my chronic pain. And as I get older, my ligaments will naturally tighten up so my joints won’t be so prone to moving in ways they shouldn’t.
Which brings me back to the anger. I’m feeling so many things right now: a weird combination of denial, acceptance, depression, despair, etc. But the prevailing feeling is definitely anger. I’m angry that for years doctors dismissed me because they couldn’t find an easy answer. I’m angry that all they saw was a hysterical young woman instead of a patient experiencing pain. Had they looked—actually looked at me instead of relying on a stereotype—maybe I would have had a diagnosis sooner. Maybe I could have already been doing proper physiotherapy for months, years even. Maybe I didn’t need to be in constant pain for so long.
I’m angry that I missed out on so many things because I was in pain. It’s infuriating to think that I gave up things I loved like volleyball and swimming because of a treatable, easily diagnosable problem. And it’s especially aggravating that I gave these up because of pain that could have been managed shortly after my symptoms began. Every single doctor that bothered to examine me remarked upon how flexible I was despite the pain. They didn’t think this was a clue, one that might lead them to conclude there was something wrong with my connective tissues. No, they just took it as proof I was a drug and/or attention seeker who was wasting their time. After all, someone who is in so much pain shouldn’t be able to move better in certain ways than a normal person, should they?
It’s only been two days since my diagnosis but already the anger is subsiding. It’s still here but it’s fading, making way for something I haven’t felt in a long time when it comes to my health: hope. The hope that with a lot of hard work and a little luck I can go back to something resembling normal. That maybe I can sit or stand for more than half an hour without being in excruciating pain. That maybe I can walk around the mall without everyone’s eyes on me because my appearance doesn’t match their idea of how a disabled person should look.
After all these years of pain and suffering, things are finally starting to look up.
For those of you who are relatively new to my blog, today is my birthday. On my birthday every year I take the time to write an off-topic post about an issue that I’m passionate about. Here’s a sampler from the last three years:
2014: Sempre Libera
If you don’t want to read an off-topic post, just return tomorrow because then I’ll be back to my regular book reviewing routine. But if you do, stay tuned for a discussion about identity, healing and discovery.
Last year I talked about tasting freedom. Just tasting what the outside world was like when I travelled and then being dragged back down to the horrible reality of my hatred-filled small town. I said that when you taste freedom, you never want to go back and coming ‘home’ was like being woken from a beautiful dream. It was jarring and so disappointing.
Well, this summer I moved to the city. Not necessarily the city I want to settle down in permanently, but a fairly major city that offers me opportunities that I never would have had back home in my small town. Before I moved I was excited about finally being able to be my real self. But now I’m faced with a problem: who or what is the ‘real’ me?
I’m not the first person to observe this but I think I’ve been pretending so long, keeping up a facade just to survive in my small town, that I don’t know who I really am anymore. What are my interests now that I’m not so confined to the narrow definition of what was socially acceptable back home? What kind of people do I want to associate with now that I have more of a choice? Basically, who am I? Who is the real Carrie Slager?
I’m still finding that out, to be honest.
Since moving here in August, I’ve applied to become a volunteer tour guide at the local antiquities museum for a few hours a week. I’ve checked out a few of the city’s societies and various clubs but haven’t really found a perfect fit quite yet. I haven’t really gone out in the evenings because I don’t drink but I will be attending a Halloween party later this month. And best of all, I’ve found friends that share some of my interests, like reading.
And even though I’m still finding out who I am, I honestly can’t remember when I’ve been happier. Work is busy and there are always little daily stresses but compared to how I felt six months ago, I am so incredibly happy. Not everything is perfect and I’ve had to deal with my fair share of jerks but I am also so grateful to be in the city where I can largely avoid people I don’t want to associate with. In a small town that’s just simply not an option because any conflicts are so amplified in that small, pressure-cooker environment.
It’s hard to express just how happy I am that I’m out of my home town. A few weeks after I moved here, I broke down crying one evening—not because I was sad or homesick. No, I cried because I was so happy and yet so angry that I missed out on this level of happiness for years because of where I lived. I cried because I remembered how anxious, depressed and stressed I was every minute of almost every day back ‘home’. I cried for those years I wasted when I was in survival mode, rather than actually living.
But those wasted years have taught me something very important: even though I don’t know who I am, I know who I don’t want to be. I don’t want to be the kind of small-minded person that rejects anything from outside their narrow worldview as bad. I don’t want to be the kind of person that tears down others just to feel better about themselves. And I certainly don’t want to be who I was: someone who put on a mask just to survive.
I’m learning how to put the past behind me and focus on the few good times, rather than all of the bad. It’s hard to move on but it’s something I need to do if I’m going to be able to be truly free. Sometimes I think letting go is the hardest thing of all but I’m working on it. I refuse to let the bad things in my past define who I am today.
I may not know who I am but I know who I don’t want to be. I think that’s a good start.
Having never really moved before, I never realized just how complicated the whole process is. For the past few days not only have I been trying to find my way around the city but I’ve been cleaning like mad. My place wasn’t dirty per se but it was dusty enough to set off my allergies so I’ve been cleaning like a madwoman. Then of course I had to unpack all of my stuff, including the boxes and boxes of books.
So, to make a long story short: it took a lot longer than I expected. But I really am back on the blog this time. Sorry for the false hope last time! Tomorrow really is full steam ahead now that I’m fully adjusted.
It’s been two weeks since I posted anything and I think I owe you guys at least an explanation for that, seeing as I dropped off the face of the internet with no warning whatsoever.
Essentially, things got very, very stressful for me at work as I had to take on more and more responsibilities (including training the new employees) and I just couldn’t find time to read. I just didn’t have my heart in my blog and I didn’t want to keep posting half-arsed articles that were essentially meaningless. So I didn’t post anything. I’m not sorry that I didn’t post but I am sorry that I didn’t warn you guys about it since you deserve at least an explanation for my random disappearance (especially since some of you emailed me with quite a bit of concern).
Basically: things got stressful and I made the decision to drop the ball. I’m picking it up again now and I’m ready to get back into the game, where I feel like I belong. I’ve missed posting here on the blog these past two weeks and I’ve really missed the awesome community I’ve built up here. I can’t wait to get back to that!
Thanks for staying with me! In the future I’ll at least warn you before I go incommunicado.
Yep, still not feeling altogether well. I’ll try and post more in a few days.
Now that I’m fully recovered, there are a couple of things I learned from my experience getting an adult tonsillectomy with essentially no de-briefing from my doctor other than “go to the ER if you start bleeding”. So here are some things that if you have an adult tonsillectomy like I did, you probably won’t be told:
1. Everyone’s pain levels and recovery time are different.
When I told a lady I clean house for about my impending tonsillectomy, she told me that her sister had one in her late teens and had actually been bed ridden for about three weeks. My bosses’ daughter had a similar experience. And a quick Google search had me reading through any number of horror stories about how getting a tonsillectomy as an adult was an absolute pain-ridden nightmare.
Except for me it wasn’t.
I have the world’s worst immune system and I have a bad record with injury recovery, so I was definitely expecting a hellish experience. Except I was really only in what I would count as moderate pain for about 5 days after the surgery. After that? Meh, not really. I really think pain levels and recovery time are different for every person and my experience is definitely not representative of the majority of experiences. For me, having a combined tonsillectomy and adenoidectomy was far less painful than the time my right eardrum burst or when I had H1N1 a couple years ago during the peak of the epidemic. But for some people, an adult tonsillectomy will be incredibly painful. Continue reading