Rheumy

Marc came to meet my Rheumatologist Tina Bunch today. I’ve been her patient 3 years and he finally got to meet her.

I asked her if I could get better control of my RA; just exactly how much pain and symptoms am I supposed to live with? She said my joints aren’t as bad as someone they’d start on a biologic but she “didn’t live in my body” and trusted my complaints. She recommend starting Humera injections every other week. And of course staying on the Methotrexate. The plan is to try it four months, if it helps me feel better, that’s awesome. If not, I’ll go off it. I had a crap ton of blood drawn including TB work up as a precaution with a biologic.

Marc had questions; it was nice that he came and finally met her. He liked her, just like I do.

On my way home, I could feel a migraine brewing. Ugh, and I want to stay away from triptan for a couple days; I’ve had to take so many.

Home. Check on the kids. Going to nap with ice on front and back of my head (ONB injection sites are sore from Serapin yesterday). Took Frova and indomethacin and will nap a couple hours. This week has been so busy. And I’m in rough shape. I need rest today. But I hope I can still get some things done. Laundry? Phone calls? Erika’s Caring Bridge? Some biz?

💜

Serapin Day

But who really gives a shit? Same old, same old. I’m just a little Rockstar in my own little rock star universe. When I post these updates on Facebook, no one really knows what to say anymore. I should just stop posting so much about The Chronic stuff. It’s awkward. So very awkward. 

That which does not kill me only makes me weirder and harder to relate to.

Just shutting up would make everyone more comfortable. I know there are a ton of Pain Warriors out there who simply shut up; they don’t talk about it. Donna has always been Niagra-fucking-mouth, tho.

Therapy today with Lisa. I realized what’s really been upsetting me with the kids. I feel ignored. Ignored X 5. It’s probably my own fault and I’m just being hypersensitive. I do not know what to do. I would love 5 days off for good behavior, either to go to a Sanitarium or the Cayman Islands. Being ignored, feeling like a burden, pathological lethargy, varying pain and oppressive summer heat… it’s all so totally exhausting. My soul feels like a thin wet rag. Although my body shape borders on obese. And I am overwhelmed with feelings of uselessness. Such a waste of space. Not really successful at anything accept feeling useless and guilty. My biz is a joke and so am I.

And my allergy asthma cough is back really bad. Productive, hacking, disgusting cough. Sometimes it leaves me in fits, gaping. I could collect a jar of sputum. Fucking gross.

Date night with Marc tonight. I’m so tired and I need to make a dinner for the kids. Joy.

No longer apologizing…

​This is an excellent article. And reminds me that I am so so so NOT there. My Guilt Feast…hour after hour, day after day. It wouldn’t be so powerful except for the reason that everything is my fault and I’ve somehow caused this illness. Do people with cancer believe that too?

I’ve Decided I’m No Longer Apologizing for What I Can’t Do Because of My Illnesses

By Amber Hosea

I am disabled. It wasn’t until this year that I started to accept that, and realize that my illness (or rather illnesses) is here to stay. This year I was diagnosed with a systemic autoimmune disease known asSjogren’s syndrome

I won’t lie, this illness is a cruel one. I honestly don’t know how I’m going to feel from one day to the next. I had a hunch a few years ago that I probably had an autoimmune disease since my entire body seemed to be under attack. I’ve been diagnosed with illnesses like interstitial cystitis andfibromyalgia, but I didn’t want to believe that I couldn’t cure them. I tried every remedy I could, but over time my health was only getting worse. I was angry that no matter how much willpower I had or how much money I spent, I couldn’t get well. I was angry at other people for being able to take their health for granted. Most of all, I was angry at myself for the guilt I felt and the need to apologize over and over again for being sick.

I recently decided that I will no longer be apologizing for not being able to do what I was once able to. Saying the words “I’m sorry” implies that I have control over my debilitating symptoms. I think we carry this guilt with chronic illness because we feel we’ve somehow brought it on ourselves. I can no longer apologize or feel guilty for not being able to make plans, or for being unable to work, or even brush my hair sometimes. It’s not my fault. I spent so much time trying to convey what it’s like to be ill to others, and I avoided the fact that I wasn’t willing to accept my limitations. I refused to believe it wasn’t going to get better.    

Now, for my sanity, I have to mourn my former life and simply let it go. I’m releasing that energy into the universe so it no longer weighs me down. I know firsthand that chronic illness can break your heart over and over again, and there’ll be days when you feel as though the loneliness will shatter you into a million pieces, but I would like to remind you that it’s not your fault. I know that you’re simply doing the best you can.

I didn’t want to accept how sick I was because it felt like giving up, when in reality learning to accept my limitations and let go of the guilt has been the best thing for me. It’s allowing me to start over. 

I’d like to believe that I’ve been given this illness for a reason. Whether it’s to educate people about this disease, or to learn a lesson about myself, or hell maybe it’s just that I’m tough enough to take the beating. Whatever the reason, I’m learning to embrace it. Who knows, maybe I’m turning into a superhero. I mean, my body does do things that a “normal” body doesn’t. 

Yeah, that’s probably it. I’m a superhero.

I have a life.

Today Facebook reminded me of memories from last year:

Friends are precious❤❤❤

And this was today… Christy arranged we all go to see the movie Bad Moms together…

See? I have some life…not a total recluse. Pretty good at making the effort. My friends are wonderful…a life line for me.

This was last night for my biz:

My friend. My soul sister. Christy.

To the Person Who Thinks Chronic Pain ‘Can’t Be That Bad’

I have a friend. A poisonous friend.

When she is angry, she makes my days hell and my nights sleepless. She attacks me when I least expect it, especially if I’m lulled into a sense of security. She follows me everywhere, every day to the point where I truly cannot remember a time that I lived totally out of her clutches.

She is cruel. She cares little for family occasions, first dates, social events and the like. She perhaps forces me to stay home, or she makes sure she is right there with me, ensuring I don’t forget her presence for a moment.

She’s been a silent witness to some of the most remarkable and agonizing moments of my life.

She’s always here.

Her name is Pain.

There are many who live with her, just like me. We do our best to keep on living despite her glowering presence. It doesn’t matter how long you live with her, you never become immune to her.

Yes, we learn to continue our lives, even the mundane daily stuff that keeps it “normal.” Yes, we smile, laugh and make jokes. We make love, shop and eat, despite the anger it causes her to display, and we relish and appreciate anew the simple joys that take much to remove or lessen. Cuddling my grandbaby. Looking into her eyes. Laughing with my children and hearing them say, “I love you Mama.” They all make life with her worth living.

But let me tell you a secret. It hurts! It never stops. You wake, it hurts. You rest, it hurts. You do some basic physical activity, it hurts. You eat, it hurts.

See, constant and chronic pain isn’t something you magically get “immune” to. If I kicked you in the shins wearing my boots every 10 minutes, you would not be desensitized after the hundredth kick, would you?

You don’t get magically used to pain.

Let me tell you another secret.

I don’t have a “low pain threshold,” and neither do the huge majority of my pain family — those others I know and love who suffer daily alongside us all.  On the contrary, whenever it’s possible to physically do so, we do things like go to markets, gatherings, the park and shopping with our babies. Yes, like “normal” people! But you see, we often do it in such pain that if anyone else experienced it, they would demand pain relief at the closest emergency room.

Normally, pain is your body’s sharp and intense warning that something is amiss. You are meant to feel it, and the amount of pain allows you to determine how serious the injury may be. With chronic pain, the pain is no different. It screams at you to notice it. It rends your heart and mind with its incessant demands to be noticed and treated. However, no matter what the pain relief is, unless there is an urgent or acute injury or illness on top of that pain, then the aim of the medical profession is to relieve it to a degree. The aim is not to take away pain. It is not necessarily realistic to do so long-term unless we are palliative. So that’s the next secret I have for you. Despite often hefty pain-relieving medications, pain is diminished to the point that we can push through it and attempt normal function, but she is still right there

Please, the next time you think to yourself about someone with chronic pain, that it can’t be “that bad,” that we are being hypochondriacs or that we are just being a baby or just trying to get out of some activity, give yourself a forehead slap!

Here’s another secret.

It’s rare for someone who lives with pain to actually tell you that she hurts so badly she fights the urge to bash her head against a wall, or scream, or just cry about the unbearable unfairness of it all. While you look on, we  protect you from our pain. “Nah , it’s fine, just a twinge.” “It’s OK, I’m just a bit sore.” Or the automatic response, “Fine thanks, how are you?”

We learn fast. To tell you of pain, and the misery she brings, often eventually creates anger, resentment, ill-treatment, impatience, and out and out rudeness. At first it’s all sympathy. But I don’t want that! Empathy! That’s what I need. Not the (not-very-discreetly) rolled eyes and mutterings.

This is why I protect you. Because to one who hasn’t experienced chronic, disabling pain, to show that I hurt appears to diminish me, to be a weakness, a failing. It’s humiliating to justify my pain, so I seldom choose to do so.

The best thing that you can do for a friend or loved one who also lives with pain is to realize that pain hurts! If we are exhausted, sore or unwilling to do some activity, it’s because we hurt, badly. Even at the moment that you helpfully attempt to change the subject, that hurts, too. When you chatter brightly about your toe or that sore back you had once, you diminish our reality and you diminish your capacity to hold anything nearing empathy for us. Instead, ask what tangible thing you can do to help. Or say truthfully, “I don’t know how that must feel, but I’m here if you need me. I believe you. I love you.”

Remember that I invariably almost over-respect any pain that you have. I will often fuss relentlessly if you are even mildly sick or hurt, because your pain is one that I feel I can help, unlike mine.

Most important, here is the final secret I will share with you.

Pain moved in uninvited. We didn’t ask for her or welcome her. She is something inflicted on us entirely against our wishes. So please don’t punish us for something we have zero control over. And learn to listen to us, and hear what may be underneath our “just a bit sore” and “It’s OK.” That means more than anything.