Control: 1) to exercise restraint or direction over; dominate; command. 2) to hold in check; curb.
How many of us believe we’re in control of our own lives? Or the lives of others? I sometimes get caught up believing it, about myself. But the truth is, far too many factors influence our day to day lives. And when we really examine them, control isn’t always in our favor.
I think my struggle with control really began after my RSD diagnosis. My daughter was a preschooler. She’d go to school and I’d pick her up in the afternoon. That she’s as level-headed as she is, is NO thanks to me. I had the two of us on the tightest schedule imaginable every day. My thoughts were on a loop: do (activity) and then I can sit down. Then (fill in activity) and I’ll be able to rest. This was every day. And she patiently went along with it, without much choice. Poor kid. I cringe when I remember.
Why did I believe that I had control? Maybe it was a coping mechanism? Maybe it was the stretched-to-the-limit thread that I grasped from morning til night, just to survive.
My pain was tremendous back then. So much was out of control in my medically-managed life. Maybe it’s a blessing that I don’t remember all of it. The fact that my husband and daughter didn’t run for the hills still amazes me and fills me with gratitude.
I wasn’t a nice person to be around. Outside the house, I managed to keep up the veneer of “everything is awesome!” But once we got home, the mask came off. I was miserable and in agony. The fact that no one at school ever knew what was happening shows the level of acting that I did, all so no one would know our business. Why?!?! Why was I obsessed with keeping control over that? Did it matter that I was having procedures all the time? To the folks at school? Mostly it was because I didn’t want our little girl to miss out on anything. I cried at the thought of her not being able to go somewhere with her friends or not being able to have friends over. So, what did I do? I’d let her have occasional sleepovers. She always maintained friendships with great kids, so I didn’t mind. Our apartment is large enough to give then space but small enough that I was aware of everything the whole time. I controlled it all. Until I didn’t.
At some point, the mask cracked. Everything hit the ground all at once. And I was faced with being honest, changing the way my health was managed and how I interacted with the people I love most in the world. So, I got the pump, my pain was managed and we started talking. It was honest and real, no acting for the benefit of anyone. It was just me.
Fast-forward to now, all of this is on my mind for a number of reasons. One of the biggest is that my daughter is growing into an adult. She’s looking at colleges! And I can’t make that huge choice for her. It’s not about what we like for her anymore. It’s about her. Maybe since she’s an only child, that fact is amplified 100 times.
Another was pointed out to me by a new friend, about life in general. We think we’re doing a great job, balancing loads of plates in the air. But when one slips and shatters, we’re faced with the harsh reality: I can’t control everything. I can only control my reaction to things, how I-me-myself handle various situations. As hard as it is to accept that, it’s the truth.
I’m trying to focus myself on the year ahead, trying to manage myself. Not anyone else. And it’s hard. Looking at colleges, dealing with work, planning holidays & events – there’s only so much control to go around. Plates will fall. They will break. More than a few will. And it’s not the end of the world.
Peace and painlessness,
The fatigue is brutal. I’m not talking the “it’s been a rough day/long week” variety. I’m talking about the kind of tired that you feel in the very fiber of your being. The very act of breathing takes work. Picking up a mug – one that’s full of coffee – takes Herculean effort. That’s the fatigue I’m referring to. And the kind that I’ve been dealing with for about three weeks. It resolves a bit, then amps up again. Resolves and returns.
The lymph node under my right arm was swollen and sore again. That’s my marker, beyond the tiredness. That and the light red coloring that’s made itself comfortable across my face. That’s it: I’m officially in a flare.
When my immune system has been taxed as it has recently, my body falls into this mode. Although my joints hurt more than usual, it’s the fatigue that gets me. I can work with pain, I already do that most days. But when I don’t have the energy to walk across the room? That’s a problem.
The only things that forced me out of bed were seeing my daughter off to school and going to class myself. Those three day intensives make missing one class impossible. I’d have had to take them all over again. There’s literally no time for that. And it would have infuriated me to have to do it.
Since the second half of my term doesn’t start for a few weeks, I’ll try to rest a little bit. That’s not always possible, as we all know. I’ve been exhausted during the day, falling asleep at odd times. By bedtime, I’m wide awake again and up during the night. This only adds to the upside-downness of my life at the moment.
Outside of that, I’m intensely proud of myself. The courses I’ve just finished wrap up my basic requirements! Now I move into completing my track-specific classes – some of which I’ve already taken. It’s exciting. I’m debating between sticking with my original focus, wardrobe technician, and a double certificate that would include costume design. There’s a lot of overlap, so I’ve already taken classes in both areas. I’ll have to see how I feel along the way.
By the way, I worried needlessly about that last class. My partners were awesome and we actually had a lot of laughs as we finished the final project. I wore a long-sleeved shirt and leggings underneath all of the pinned garments, so my skin wasn’t exposed. And we worked carefully and slowly, so I didn’t have to worry about being moved suddenly. It was fine.
This is my life at the moment: fatigue, fashion, and family. On a loop. LOL.
I’d write more, but the headache I’ve been battling on and off for a month, (it feels like it), has been with me all weekend. It’s sinus pressure time!
Sending all of you good vibes and hopes that your feeling well. Hopefully, the weather will change – for real – and we can finally enjoy fall. 🍁🍂
Be kind to one another.
Peace and painlessness,
I’ve dressed a certain way for years. I’ve never tried to draw attention to myself, at least not through my clothes. Loose shirts, (or slightly tailored tops), a cardigan and jeans are my uniform. I don’t wear form fitting anything. It’s absolutely NOT my style. I don’t wear dresses, skirts or shorts. No, no and noooooo. Obviously, I think they look great on everyone else. I’m rendered completely uncomfortable and feel ridiculous if I even try them on. It’s just not me.
In a class I’m taking, [a mandatory, three day, styling intensive], we have to fit clothes as though they’re about to be photographed. Many of the catalog/print models you see are pinned into the outfits they’re wearing. Styled from head to toe so the outfits look tailored to that particular person. They’re not – it’s a beautiful illusion. So, we all have to take this lecture that involves pinning each other into various garments so they look tailor-made for US.
While other people might not mind taking part in this, I’m riddled with anxiety. Last night, we worked on pants. Our assignment was to bring in clothing that was one or two sizes too big. My two partners pinned the pants I was wearing so they fit really well, but they weren’t as loose as I wear my clothes normally. In fact, those pants were purchased when I still had the pump. Every item of clothing I owned had to allow for the hockey puck lump protruding from my abdomen. Waistbands were larger, shirts more flowy. That’s how I felt safe and unexposed. It was my armor. Imagine thinking of flowy clothes as protection. But they were mine. Protection from prying eyes, from having to answer questions, from having the pump be the obvious focus in someone’s line of vision.
Years ago, I weighed over 180 lbs. And I’m not sure I ever felt worse about myself than when I was that size. I’m only 5’2. It wasn’t about the number, not entirely. It was about what that number did to my joints, to my nerves. Being in so much pain that your mobility decreases, even as your weight increases, is brutal. And that’s where I was, nearly 14 years ago.
After struggling with it for so long, I joined a popular group and managed to lose over 50 pounds! I was SO happy. Then the morphine arrived. I’d reached that awful precipice where your pain is bad enough that they have to keep treating it, BUT I’d maxed out on the safe number of injections one can have. It wasn’t a good time.
That’s when my doctor introduced the idea of the implanted pump. We went through the whole procedure. I’ve written about it in previous blogs. But then he said the one thing that made me depressed: “you might gain weight with the morphine.” My head was screaming: “Are you kidding me? Do you know how hard I’ve worked to lose all of that weight??” But my body was screaming: “what the heck is wrong with you?? Sign the pre-op papers and get on with it.” So that’s what I did.
And I did gain weight. If that wasn’t insult enough, I’d be swollen on days when the lupus decided to flare up. It was a drawback of getting the best relief of my RSD life. I’m not always the greatest eater, which doesn’t help. My biggest vice is coffee, extra light with half & half and three sugars. Although I’m back down to using two now. Yay for me!
We make sacrifices when it comes to pain relief. There’s not a lot of choice involved. I’m a wife and mother. My daughter was ten when I got the pump placed. I was able to help out at school, be more active and live life in a more productive way. But the pounds! Oh the pounds.
When the morphine stopped, the weight slowly started coming off. I’ve lost about 20 lbs since then. And I’m happier for it. My joints are certainly happier.
But back to the class. Besides my obvious body issues, I’m a person with nerves that react ridiculously on some days and not at all on others. I have to be careful when I interact with people. Obviously, it’s better if my arms aren’t grabbed or tapped suddenly. My back is a mess, super sensitive – especially near the incision scars. Same with my abdomen. So now I’m left debating between telling my partners and trying to keep them at arms length. Do I tell my professor? Do I suck it up and get through next week as best I can? Ugh. This is when stepping out of my RSD world is complete crap. Everyone there understands. Everyone there gets it. In the outside world, I’m an anomaly once more. I’m an anecdote again, “I met this woman with a weird disease.” This is when I doubt myself as a costumer, when I struggle to see myself succeeding in the work I enjoy so much.
It’s ok. It’s another thing we don’t always think about as chronic pain patients. The crossover between our medical lives and our work/school/home lives. It’s something I haven’t encountered on this scale in a long time.
Knowing me? I’ll just deal with it as it happens, without making a major production out of it. It’s a pass/fail class that must be passed. It’s just what’s next, so I’ll manage. Carefully. If I need to speak up, I will since I’m not looking to kick off a flare.
And I LOVE my sweaters. It’s sort of my every day homage to Mr. Rogers. He knew what it took to make a “snappy new day.” I’m telling you, it was the cardigan. 😉
Be kind to one another.
Peace & painlessness,
I found myself in nearly forgotten territory during the last few weeks. The cane that I’ve been forced to use irks me. Granted, it was an extension of my arm for years, but now I just resent it.
And I’d almost – ALMOST – forgotten the trials of being a person using an assistive device. Catching the bus while wearing a knee immobilizer is no picnic. Standing on a crowded subway car. The subway steps!! I find myself ascending and descending stairs slowly and carefully, so I don’t disrupt the brace. Or make my knee pop. And, unintentionally, I’m holding other people up.
And trust me when I say that some New Yorkers have no trouble showing me how much they don’t appreciate it. I’m not that kind of NY-er, by the way. I’m the kind that was raised to give up my seat, to let other people on the bus first. Especially elderly people or those with canes. It’s in my DNA. Unfortunately, other folks aren’t genetically inclined to do the decent thing. But that’s another story.
It sort of surprised me to remember that I hadn’t used my cane in over a year! How is that even possible?!?! It seems like mere months ago. If you know me well, you’re bound to be treated to stories and factoids that involve things that happened “about a month ago…” or “a few weeks ago.” Meanwhile, it was more like a six months or a year. I’m not sure why.
Part of me thinks it’s the complete mushing up of my brain by my meds. I used to have a great memory. Nowadays, if we’ve just met – guaranteed – I’ll suspiciously never address you by name. It’s not personal, it’s that I legit do not remember it. It upsets me because I used to have great recall for little details. Now, the big ones completely evade recognition.
So, after realizing I could safely walk without my cane, I didn’t anticipate needing it again. Ditching it was something like that scene in “Rocky 3,” where Rocky and Apollo Creed are running & jumping on the beach. That amazing slow-motion celebration as they realize that Rocky’s ready for the big fight.
So much for my imaginary victory leaps. I joke, but it was disappointing to snap out of myself and see the light of reality again. Do you see the trend here? Those comfortable patterns of denial between major health events in my life? It’s the coping, it’s simpler. It’s just how I roll as a chronic patient. If I’m not dealing with a specific issue, the issue very nearly doesn’t exist.
But the changes I was able to make in my life happened shortly after the pump first malfunctioned. It was during the spring of 2016 that everything started morphing into what my life has ultimately become. Until that stupid pop. That incredibly stupid, arthritic pop.
My knee is clearly going to be a problem. The arthritis has been there for years, acting up every now and again but not in any major way. Now? It’s like my body sent a “let’s give Becky a rest” memo that my knee denies receiving. It feels 100 times better than it did even a few weeks ago. But, every once in a while, I feel that popping sensation and then it hurts again. I don’t want to deal with it. But, unlike some of the other medical issues I disregard, I can’t ignore this one.
I’m still waiting to see what’s happening with the additional injections I’m supposed to get. And the orthopedic office finally sent the order for physical therapy. It’ll help. It’ll hurt first, for sure. But it’ll help. I’m not the best patient, especially where physical therapy is concerned. But, this being my knee and all, I can’t avoid the issue. You can surely sense the joy that my family experiences when it comes to stuff like this, having to deal with ME. LOL.
For now, my focus has to shift to include other things. School’s back in session and the shows will be here before I know it! This academic year, I’ve added another job to my calendar. I’ll share more about it when I have details.
So, my slow-motion victory jaunt will have to remain in my imagination. For now. 😉
Be kind to one another.
Peace & painlessness,
Yesterday, I met a doctor who surprised me. Pleasantly! In fact, my mom – who accompanied me on this orthopedic quest – was shocked, but thrilled, by this unexpected visit.
I’d never met this doc before. After the ER two weeks ago, we were referred and I made the appointment. My pain and upset were so high that I forgot to ask the doctor’s name. Ridiculous, I know. But at least all of my doctors are in the same hospital network. It’s easier that way. Now that everyone is connected through the same system, it facilitates better communication all around. Well, it’s supposed to anyway.
But on a rainy day, (as it always is on medical appointment days), we waited in a mostly empty patient lounge. Then we were moved to a long hallway with examination rooms on each side.
It brought back memories of when I worked in the hospital. The doctors I worked for were a few floors up, in the OB/GYN unit. We were doing a study on women who’d had multiple pregnancies. It was a dual-country study, between the United States and Israel. I stumbled into it when I signed up as a volunteer. The coordinator decided I was too experienced, as a nurse, and brought me to an amazing obstetrician who hired me on the spot. I even got my name listed as an author! That doesn’t happen often. Anyway, I got lost in my memories for a minute.
The hall was unadorned, for the most part. The exam room had posters depicting illustrations of shoulders, hips and knees. We were caught up in the knee pictures when a young, friendly resident came in and got the lowdown on my left knee. I prayed he’d say that the MRI (from Sunday) showed a tear that was healing on its own. He didn’t. The films were difficult to read and the problem was behind the kneecap. Severe arthritis had caused the bones to interact like “two opposing gravel roads.”
But on the hilarious side, the resident left the exam room and told the main doctor – about me – “she has so much going on but she’s really nice….. So she has that going for her.” I am crying with laughter at the thought of it. Hey, I want to be remembered for being respectful and nice. I can handle that. It certainly beats being called a freak show!
Main doc came in and said that my knee is “a mess.” He said that the arthritic degeneration can’t be slowed down or stopped, which I knew, and all they can do is make the knee more comfortable. Especially since I’m not a good surgical candidate. He said he wants to try minimally invasive treatments before going toward surgical repair, for as long as possible. He’s giving me time. And if that day comes, he’s sending me to “a guy that does knee replacement all day, every day. No one else.” All because he understands RSD. He’s also the one who told me about the nice comment. We were cracking up.
I mean, wow. I didn’t need to retell the story three times. The visit took about an hour and a half, but they were actually READING MY CHART!!! That in and of itself is a miracle. He mentioned my history with lupus before I could tell him!
So, what does all of this mean? I had a cortisone shot yesterday. Now I know why people should be allowed to ice afterwards. OUCH. The pain kicked up at around 7 p.m. last night and is still with me this morning. Ugh. Thanks RSD. 😠
Then, over the course of a month, I’ll get three gel injections. Supposedly, that will help cushion the gravel road surfaces of my knee. When I said, “but there’s no tear? What caused all of this?” He answered, “oh no, you’ve got tears. It’s a mess in there. But the bottom line is that we need to make you more comfortable.” #Truth. Honestly, he had me laughing the whole time. That doesn’t usually happen during my medical appointments.
So, today I give my thanks and acknowledge the great staff of this place. They were kind and respectful. They knew RSD. They know RSD.
And – complete sidebar – when I went to deal with insurance stuff afterward, into an office off of the unadorned hallway, I got a nice surprise. The walls were covered in pictures of the doc with major professional athletes from baseball, basketball and football teams. That impressed me. If he can get them up and playing, maybe he can help me. Who knows?
So there we have it. Even as I got some crumby news, I got it sprinkled with a little bit of glitter in the form of humor and respect. All of these medical folks have no idea how far that goes with us. Respect goes a LONG way. Validating the truth of our condition goes a LONG way.
Be kind to one another.
Peace & painlessness,
Ok, the title is slightly sarcastic. But that’s essentially what happened to me, a few weeks ago.
I’d spent a lovely evening out with my mom & daughter. We’d eaten at a favorite restaurant. It was a good day. It was, that is, until it was time to leave.
I attempted to gracefully remove myself from the inside seat of a booth, when my knee popped. And I mean POPPED. It was brutal.
My mom, who’s known most of the staff for years, was talking to the manager. My daughter, nearly walking over to join them, stopped and asked if I was ok. I was afraid that I’d cry, but said, “My knee just popped really… badly.” Realizing that she was worried, as my mom was when I didn’t stand up right away, I carefully got out of the seat and slowly made my way to the door.
After we said our goodbyes, my gal and I walked home – well, I limped more than anything else. On close examination, my knee cap was swollen and sore to the touch. Since I have arthritis in both knees, this isn’t uncommon. But it was different.
The next few days were worrisome. The swelling didn’t get better and the pain stayed consistent. But, gradually, things calmed down – as they usually do. That was two weeks ago.
Last Tuesday started like most others. Since we’d stayed home for too many days, and my daughter was attending a college intensive at her school, I decided to run some errands. My leg was sore, the knee doing more “bubble-wrap” popping than usual. As I arrived home, my leg buckled and the pain was surprising. There are two long flights of stairs to my apartment. They might as well have been the stairs to the top of the Statue of Liberty. Ugh!
My daughter arrived home. We chatted while I was washing the dishes. But, as I stood at the sink talking to her, I felt what can only be described as a firecracker explode in my left knee. The burn was harsh and rapidly traveled from the middle of my leg to my ankle and back up. Rarely have I been in so much agony that the only sounds I can muster involve crying, but that’s what happened. The whole thing absolutely terrified my daughter, who stood helpless as I couldn’t walk, talk or move. We managed to maneuver me to the couch, where I thought I’d convinced her that I was ok. It might have worked when she was three. She’ll be seventeen in a few months. 😬
My husband wanted to bring me to the ER, I refused since it was so late in the day. As a former nurse, I am well aware that more gets done during the day. So, after calling my pain management doc’s emergency line – and being told that it would be “reasonable to go the ER and be checked,” – I decided to go the next morning. After sending my husband and daughter off – forcing both – my mom and I went the ER. The docs ordered an X-ray, which was negative for a break. But they said I had to see an orthopedic specialist to rule out a torn meniscus. The meniscus is the cartilage that absorbs shocks in the knee.
So this has thrown a lot into the mix. Our plans to travel this week had to be adjusted, as I wasn’t allowed to fly. I can’t schedule my classes for the fall semester since I can’t manage the subway stairs right now. I’m only supposed to be minimally mobile until the ortho sees me next week. My husband rented a wheelchair while we’re away, and I’ve taken Blue – my trusted cane – out of retirement. Temporarily.
I strongly dislike being dependent on people. Most of my adult life – through my eyes, anyway – shows me being a burden to others. Especially my husband. I finally got to a place of real strength, that others can see, and this happens. I resent it. Really, really resent it.
My selfless husband and daughter have taken turns wheeling me around, when I’m not walking. I know I’m giving them a hard time, I can’t help it. This is torture.
Between the pain and aggravation, I feel like I’m in a rut. This is life with a chronic illness, isn’t it? We take twenty steps forward to be thrown thirty backward, every now and again. It’s a reminder that, no matter how hard I try to kid myself, I’m not the average patient. Everyone telling me to ice it, elevate it, etc. Me telling everyone that I can’t use ice. Their faces registering their “ohhhhh, I forgot about the RSD,” reactions. Oh well.
Once again, you find me grumpy and bitter, LOL. But I’m not planning to be down for long. Not planning it anyway. My secret hope is that my knee is spontaneously healing as I write this. And, when I see the ortho doc, they’ll wonder why I showed up at all. Fingers crossed.
Be kind to one another.
Peace and painlessness,
[Disclaimer: this is my opinion. Nothing more, nothing less.]
A few weeks ago, an article in the New York Times caught my attention. The author, a former chronic pain patient, wrote about his medical difficulties and his “cure.”
He details his double life: one of a working professional, hiding his injuries. The other of someone who could barely sit or walk without agony. After carefully letting the readers in on his secret, he talks about his redemption. A program that ultimately helped him escape the agonies of daily pain.
Naturally, as someone who’s spent her entire adult life in various degrees of pain, I wanted to know how he did it. The solution – boiled down to the bare minimum – is that pain is all in our mind. That we have the ability to believe it away – ok, that’s a minimized version of the treatment.
I read this article at midnight. The next morning, I re-read it, to be certain that I hadn’t misunderstood. He wants me to believe that I can just magic it away, with carefully planned meditations and desensitization therapy? So, the damage to my spine, can be willed away? If only my doctors had told me that! I’d still be a nurse! I wouldn’t have been driven out of my career.
There is NO end to how angry this made me. While I am genuinely happy for the author – I don’t want anyone to be in pain – this article lacks a complete picture. It’s one case/one success story/one type of treatment, not the entire caseload. And that leaves unacceptable gaps in the pain management story.
The problem with articles like this one is that it sends a one-sided picture out into the universe. That people don’t need medication, they don’t need anything but a strong desire to be well. It sets a dangerous precedent that the “opioids are bad!” folks love. It sends a judgmental message to the people who genuinely need medications. And clearly it puts people like me on the defensive!
I’m not saying that having a good attitude won’t help, because it does. My readers know I’ve been saying that on my blog since day one. But I wouldn’t ever preach that a happy thought cures all. It’s simply untrue. I know that desensitization doesn’t quite work that way. I’m feeling prickly today. 😖
For the RSD community- (and I can only speak about RSD, no other medical conditions) – our problems involve every body part, every function. There are warriors coping with symptoms you wouldn’t wish on your worst enemy. Skin burning, difficulty swallowing, muscle wasting, immobility. The list goes on and on.
And while some folks will disagree with me, which is their right, I worry about the audience reading this article. I worry about people who have the power to limit access to medications reading this. I’m concerned that this will further pit the medical community against chronic pain patients. And we can’t afford that.
This simplifies a complex subject. This is, in part, why we are in the midst of a war. The people who genuinely need medications cannot get them because others abuse the same meds. Many people in my groups talk of being dropped from medical practices without warning. Still others post about having their prescriptions decreased, having to make half of the amounts they used to receive, last a month or more. This is insane. I know people who’ve greatly benefitted from programs that have encouraged healthy eating, exercise and meditation. Some have even been able to stop taking their prescriptions altogether, which is awesome. But as one who hasn’t participated, I can’t comment personally.
I’d love to speak with the author. To congratulate him on his success with the program. But also caution him. It’s not appropriate to say “I’m cured! Everyone can do it if I can.” It’s way more complicated than that, as far too many of us know.
This is just my two cents. I got fired up and ended up firing up members of my group by sharing the article. Sorry about that! But we’re all forced to be fired up 24/7. The opioid war in this country has many more casualties than some want to acknowledge. I could be one of them. So could my fellow warriors who have not already been burned by all of this.
Of course addiction is a problem! My heart goes out to all who suffer with it. But I don’t want to be treated like a criminal. I certainly don’t want to be accused of trying to take advantage of my doctors and the system that truly helped me. And I have been accused. All of us have.
And patients have even turned on each other. Some who have opted not to use medication – and thankfully don’t need to do so – have called the rest of us addicts. They said we “haven’t tried” to benefit from life without medications. It’s simply not true. And we certainly don’t gain anything from beating each other up. What works for one person, or a million people, won’t work for every person. And it’s dangerous to imply that it will. It’s cruel.
Words may not hurt me. But they might do a lot of damage to my fellow warriors. And I can’t sit by and watch that happen.
Once again, this is just my opinion. To all of my fellow warriors: whichever method you choose to keep yourselves well, DO IT!! I hope it works for you & keeps you pain-free. ❤️
Be kind to one another.
Peace & painlessness,