Joint pain and range of motion; or Words I Say While Putting on a Bra

I don’t know how to begin to explain the joy that is putting on clothing when you have chronic pain issues. Because you have no idea how all that stuff is connected until one thing hurts. And it can be only one thing. Or many. Either way, it’s a load of fun.

When  people have surgery, they learn quickly what is connected with what. When I had my oldest, there were complications that lead to me basically having to have minor surgery to fix things after. And it was the most painful experience of my life. Or at least it was in the top five. I was still in the hospital when I sneezed. Before I could even start crying, there was a nurse there to put something good in my IV. Because all that stuff is connected And even coughing was profoundly painful. It took me a month to be able to walk fully upright. I have heard from people who have had even laparoscopic surgery that said they had no idea how connected those muscles were until they coughed. Or sneezed. Or went to stand up. And everything, and I mean everything went OHFUCKNO and that was the end of that.

In my case, things are strange. Things that hurt one day, may not hurt another day. One morning I may have full range of motion and then other mornings I try to stand up and hiss in that special way that means “Where the hell did that come from?”. I am lucky enough to have swelling in my sternum due to RA. And that is one of those things that you don’t know how much you flex that area until you flex it and it puts in its two cents worth. It makes using my nose spray fun because sneezing is so painful that I will brace myself on the counter. Which is a bad idea as that is how you hit your head and knock yourself cold. Which is about the most embarrassing thing to do. Especially when there is no one in the house with you and you wake up on the floor with a bump on your head. Not that I would know from experience. NOT AT ALL. I watched Jessica do it. At least once.

So – putting on clothes and how it relates to the rest of my life.

For the most part, we cannot go in public, as women, without a bra on. This is something that can be uncomfortable physically and just socially. But on the days I cannot put one on, what do I do? My husband has given me suggestions about how to put on my bra which makes me want to stab him in the face. Guess who has never worn a bra? HIM! And guess who has no idea how to twist their shoulders and hips and torso to put one on? Well, again, that would be him. Any form of trying to put one on when you have shoulder, neck and sternum issues is amazing. Put it on backwards and turn it around? Still hurts. Put in on with the straps up and over already? Twisting shoulders and torso to get it hooked – still hurts. What it comes down to is – it hurts. It is social and sometimes physical necessity that most people who don’t have to wear one or who *do* have to wear one but don’t have pain issues don’t grok the depth of having to wear one to go out.

So let’s talk about anxiety about leaving the house. Like the bra, there are things that can make me socially and physically uncomfortable about leaving the house. And the “helpful” commentary I get about leaving the house isn’t actually helpful. My anxiety disorder and asking me what “set it off this time” is like asking me why my sternum hurts. Well, I have RA. In my sternum. Why am I having a panic attack about leaving the house? Well, I have an anxiety disorder. There is nothing that “sets it off”. It is something that lurks in my life and some days makes it impossible to do the easiest of things. And continuing to insist that there has to be something that can be done or changed or started or stopped isn’t helpful. My Vicodin helps with the pain a bit, but doesn’t guarantee that I can rotate my shoulders. My Xanax and my antidepressant help with the anxiety disorder and intrusive thoughts, but doesn’t always mean that I can bounce out of bed and run out to PetSmart. It means that I have some chemicals that help to combat the fucked up chemicals that I live with. Not cured. Not fixed. Not perfect. And surely not suddenly explainable.

And much like the weather changing can add to my pain issues, things that change and happen around me can add to my anxiety and my depression. The chemical mix I am on now seemed to be working pretty well. I felt better than I had in years. And then something happened. Something large and angry and was not something that I had any control over. My husband and my daughter managed to have a screaming fight on Thanksgiving at my parent’s house. So what little I had gained, I lost, and then some. When the adults in your life cannot act like they are adults, there is little you can do to make things better. And when the person who is supposed to have been the one who takes care of you and protects you from the world becomes the person who shoves you back down the hill, it’s a hard pill to take. Living with someone who doesn’t have your best interest at heart for whatever reason is something that will make a sick person, sicker. It is as if they have forced a weather change and then get angry when your shoulders hurt. There’s nothing I can do to fix my brain. The only thing I can do is get help from the person who is supposed to be there to support me.

Which leads me to wonder about when it has become too much. Most of us who suffer from chronic and/or recurring health issues wonder when we will become too much. When helping becomes something not that the other person wants to do, but feels they *have* to do and it becomes a burden. And in some cases, they begin to sabotage you because it’s the only way they know how to act out their frustration. Which makes you worse and you need more help. Which means they become more resentful. Which makes you worse. Because let me tell you, we can tell when you are being hurtful on purpose. Or obtuse on purpose. Or are shoving us back down a hill on purpose because it has become too much to deal with and it feels good to shove, finally. Helping me put on a bra is an easy thing. But continuing to try to help me stay calm, get things done around the house and get me to go out to do even family things, day in and day out, is way more complicated and exhausting than helping with the pain issues. Add them together, and every day that passes, some of us wonder when it will be done. Or when the help will just stop. Or turn to harm. Or if it already has turned to harm and I have turned a blind eye to it, because what the hell else can I do? It isn’t like I’m a trust fund kid who can just do her own thing. I am dependant on the person who now holds a job. And who is angry that their money isn’t enough. And who is angry that *I* don’t have enough money. Angry about things I cannot fix. I have a child to think of outside of my own health. He has to come first. And even then, it is a struggle to make sure these things are done for him the way they should be.

So I guess the long and the short of it at this point is that helping me put on a bra or vacuuming the living room is easy. Being an emotional support and respecting my fucked up chemicals in my brain is much harder. And in a lot of cases, more harm than help is given. And we can’t even explain that. Because it’s harder for me to explain why what you think is a normal conversation in some cases is pushing me closer to the edge. Just like me telling you that my sternum hurts, you have to take my word for it that this conversation, for example, is making me hurt and I need your help.

Until one day, I realize that the help has ended. And it will. I have looked up statistics on people with chronic pain, depression, anxiety and all the other little fun things I have pinging around my life and I realize that we don’t stay married. Our partners become exhausted. Or we do when we can no longer bring ourselves to continue to explain why our partner is hurting us, physically and emotionally. When we are forced to make choices about what is more important to us – monetary security or emotional support. And then we are faced with the reality that we have neither. That’s when we stop wearing a bra and going out in public. And that’s when we stop trying to become a person who can shoulder it all. We stop trying to become a person. We stop wanting to be.

And we do. We stop.

Let go and let gods; or Sarah Has Not Lost Her Mind, I promise

Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.


After years of not dealing with some very hurtful people and situations, I found myself having to face them again. This time with much more perspective and less personal involvement. Explaining someone else’s behavior when it is no longer effecting you directly is a lot easier than admitting that the person you are discussing is being physically abusive and you can’t leave for a lot of fucked up but very real reasons. Some things that have happened to me, I have to go back and ask another person who was around at the time if they really happened. Because the things are so very insane. “Did he really claim that he took the needle laying on the end table and repeatedly stab himself in the eyes? And that it was my fault because I left the needle out? Did that happen?” or “Did he really want me to take him down to the Greyhound station so he could go to New York because there wasn’t an Israeli embassy here in St Louis?” (If you have never heard that second story, it’s fucking hilarious in hindsight and a very easy story to sum up living with the person in question.)

I have to admit that I had set down a lot of those coals. Or I thought I had. Apparently I built a little metal basket for them and carried them around with me, just keeping my little hands warm on them. And using them to shape my personality. And worldview. Which sucked. Hardcore. But it was the only way I knew how to live. I used the anger to keep the fear and hurt at bay. I used it to replace my feelings and my soul. It was easier that way. If I stayed angry, I could protect my life and my children. I could keep putting one foot in front of the other. I could grind things out. And still, it was a little too hot to carry. I thought I was putting them out. Or down. Or something. I thought that therapy was helping. And it is. But I realized in a blinding flash of insight (DUH HORTON NO FUCKING SHIT THAT HURTS) that I had picked them up again. And was performing an amazing juggling act. “Ow, shit, ow fuck, ow ow ow put that down what the hell ow ow ow.” And still, I kept picking up pieces of hot coals and looking at them. BUT! I wasn’t blowing on them to keep them alive. I was actually looking at them and figuring out why these particular coals were important to me over 15 years later. Or 26 years later.

I am using coals as an example because it is the best way I can think of to describe those feelings and emotions that cling after something terrible has happened. When we have no coping skills, we have no idea what we are doing. And in some cases, it is literally impossible to let a coal go because we have no earthly idea where to put it. “You’ve been killing my cats over the last three years. Oh. Well. Yes, I have no fucking clue what to do with that one. Rage, yes. But utter confusion, too.” When Ryan was born and then was gone, I stood, empty hearted, and held those coals that went with him. And had no idea how to put them down. And quite frankly, there was no good way to put them down. The anger was too closely entwined with the loss. And the loss is a gaping hole in your chest, right below your sternum. And the coals are the least of your worries.

As I am looking at these coals and setting them down, one by one, in my mental Zen rock garden (don’t laugh – it works for me) they sit lined up on the edge of the wall. Where I can look at them without the pain. Or at least the immediate pain. And I wait to understand them and why I have them. Some are so very obvious. Others are a mystery to even me. “Who knows what poison your mother poured in your ear over the years. That woman can hold a grudge like no one else.” Well, no. Not a grudge. But an insane amount of rage, eaten over years of struggle, becomes the coals that sit in your gut and do you no good. And yet, they allowed me to survive. And now that I can handle them, it’s a huge difference. The rage and hurt and pain are all things now. Not feelings. They are concepts that I felt about things that happened. Not feelings that encompass my chest and compress until I can barely breathe real air (emotions) and resort to gulping what I can. And it was never love I gulped. I never felt that I deserved to have that.

There are a couple of years in my life that I am trying not to wear on the outside. I am trying to make them things and not violently felt time and space. I trying to believe that during that time I did the best I could with what I had. And that everyone made it out the other side alive. Certainly scarred and angry, but alive. You can forgive and love if you still live. Dead leaves no other option but dead. I wore my guilt and pain like a shroud and wondered why no one could see how awful I was. Because I felt awful. How could I not BE awful? Turns out that my feelings about those two years are much like having my zipper down. Or on really bad days, toilet paper on my shoe. Things that might actually be noticed, but I usually see it first and correct it. Or at least attempt to conceal it. Even if it means using a damn safety pin to keep the zipper up or banging my shoe on a railing in an insane attempt to knock loose that fucking streamer I am fluttering along behind me. I cannot always hide the things. But my loves and my family are willing to point it out gently. I once had to walk up directly behind a woman in a hotel lobby, very VERY close, and put a hand on her shoulder to stop her. I leaned forward and said, quietly, into her ear “You tucked everything into the back of your panty hose. I will stand here while you adjust and we will make it look vaguely normal. We hope.” She went from horrified by the touch and the closeness to relief and being thankful that someone helped her. A stranger noticed a Thing and helped her fix it with the minimum amount of fuss. That is what my above mentioned group, and even strangers, have done for me.

I am in the middle of new things and new foods and new people and new feelings. So these old things popping up can be very scary. And distracting when you are trying desperately to be a new and different person. Bettering yourself and managing to scare the shit out of yourself at the same time. And then OLD SCARY STUFF and god damnit, where’d I put the Mauser cause I am gonna shoot at that shit, and even if I don’t hit it, Imma scare the shit out of it so it leaves. But we all know that we can’t scare the old scary stuff off. We have to coax it gently off the screened in porch and slam the door behind it. And hope you remember to not leave the door unlocked. Because having that shit lurking on the porch? It sucks. No one wants to have to go out the door every day with a whacking stick to beat off the bullshit hiding under the ficus that bites you in the leg. In the same place. Every. Damn. Morning. Not enough to draw blood. But to cause a limp. That people notice. No one wants that. So get some canned food and get that damn thing off the porch. And if it comes back, get the whacking stick and remind it who the fuck is in charge around here, on this porch and under that ficus. That’s me, motherfucker. So either shape up and keep your biting to yourself or get the fuck off my porch.

Cody and I sat on a porch last night and realized that a bunch of very scary things we could say to college students, they would have no idea we stole them from Samuel L Jackson and Quentin Tarantino. “WHAT AIN’T NO COUNTRY I EVER HEARD OF? THEY SPEAK ENGLISH IN ‘WHAT’?” “Oh, I’m sorry. Did I break your concentration? Oh! You were finished. Well allow me to retort…” “SAY WHAT AGAIN. I DARE YOU!” Then we giggled really hard and then went back to watching stupid happen right before our eyes. Because it was mildly amusing stupid and I was pretty confident I didn’t need to put my foot in anyone’s ass and we weren’t going to have to help stop someone from bleeding out before the EMTs got there. So it was pretty mild and amusing. I have not had space to breathe in a very long time. A chance to be useful and helpful and funny and determined and feel like I am actually contributing to someone’s livelihood other than my own AND I am helping my family. It isn’t perfect, but it is helping.

And if you think the end of that paragraph is hurtful, tell me, and explain why. Feeling like I can take a deep breath for the first time in three years should not reflect on anyone other than me, my brain chemistry and the shitty job I was let go from. It isn’t people. It was me. And if I hurt you, I want to take the coal from you and hold it in my own hand so that we can discuss it without it hurting you. I can always add it to my rock collection. It would look nice right there in the corner.


Photo courtesy of Wikimedia Commons. Wikimedia