Thursday, June 19, 2014

What is happening to me

In answer to several emails, I think this will help.

I've had RA for over a decade. My Mother had it before me decided to pass it on along with her really bad teeth, tendency towards ingrown toenails, stubbornness, inability to ask for or take help easily and unsightly skin flaps on a body part that should be kissed and not operated on to remove um...unsightly skin flaps.

I'm just a siren, thanks to Mom.

I cried at work last Friday and got caught. I was mortified beyond words. Both of my colleagues were taking vacation days, so I was the one to open and close the office. It was a bad time for RA to strike. I usually wake up with very stiff hands but knew one morning that something was very different. I felt as if several fingers on each hand were filled with boiling hot oil. They were swollen and purplish. I couldn't bear to touch or be touched.

Went to work anyway because well....I'm a fucking trooper, that's why. I just tried to keep my hands out of sight. Called my RA doctor. Out of town, but would check for messages, they'd call me later.

Generally, when RA attacks, if I get a shot of cortisone, the swelling goes down and once I can stand the pain, I get better in about a week. The worst is when it attacks my knees or ankles as I am either bedridden or have to wobble around with my cane.

I'd never had it this bad in my hands before. Maybe a joint or two. Never three fingers of one hand and two of the other.

RA doctor's nurse finally called back. No shot until he could see me. Oral prednisone. If you are diabetic, as I am, this means that you cannot eat carbs because your blood sugar is going to go high.

I was in so much pain, hard to explain how fingers can fell a person. I had said goodbye to everyone and was quietly sitting at my desk waiting for a conference call that was to come in at 4:15. And suddenly, I just lost it.

Put my head on my desk and wept. So frustrated at doctors who go on vacations at inopportune times. Frustrated at having type 1 diabetes, RA, pre-lupus. I'm a cancer survivor, I just think once you've battled cancer, you should get a free pass for pain after that. But, no. I am human. I am a lucky human. I have health insurance.

I cried anyway. It all just hurt so much.

I heard a small noise in the doorway and looked up to see Martine, our office manager who stopped in to get some paperwork to work on at home over the weekend.

It is very humiliating and humbling to be caught crying, no....sobbing. But, she was gracious and kind. Swooped in and hugged me. Asked me if I was okay. I replied that I was fine, apologized.

"Never apologize for being a human doing a human thing," she said. "C'mon, time for you to go home. GOD, look at your hands! Do I need to take you to the ER?"

I said no, explained that it was just a RA flare up and that I was waiting for a conference call and acting like a baby. Sorry. Sorry again.

She stared at me. "Is the conference call THAT important? Can it wait til next week?"

I thought for a moment and then shut down the computer.

We walked out of the office and she held my arm all the way to my car.

It was a very long weekend. I now have shots in both hands and they are slowly, slowly improving. I saw Martine on Monday and she didn't blow my hard ass cover. She is one of those people, I suppose, who understands about stubborn old goats.

Still. Argh. The pain. It keeps me up at night, and I lay still as a stone trying not to think of cartoon characters who have giant purple throbbing fingers after being hit by a hammer.

I have been humbled by having to ask my 14 year old daughter to assist me in getting my bra on. And bit my lip when she not only helped me with true gentleness, but leaned down to kiss my shoulder as she adjusted my strap just right.

"You are my tough cookie Mama," she told me.

Right. She didn't see me blubbering.

Bing has been waiting on me hand and foot, preparing grilled cheese sandwiches extraordinaire and not saying one word about sodium content as she heats up Campbell's tomato soup because she knows I love it and it is one of my comfort foods.

I am one lucky woman. But I am also feeling sorry for myself right now and beg your indulgence.

I am tiring of hunting and pecking here.

Here's to good books that lay down flat when you read them and icy glasses of chai tea on the side. With pink bendy straws because it is too hard to hold a glass.

And gentle helpers who don't blow your hard ass cover when they catch you crying like a bawl baby....


lily cedar said...

Crying is not a sign of weakness. A person can only take so much and then their cup overflows.

My first patient this morning burst into tears when I brought her into the IV room. She has had two mastectomies in the past seven months, is Stage Four breast cancer and now has pain in her chest. She's scared and she had five appointments today.

So I hugged her, listened to her and explained her appointments to her. It's just too fucking much sometimes, life I mean.

Take care woman. Sending hugs.

MmeBenaut said...

Oh love, you poor little thing. I have osteo arthritis in hands, knees, feet and that hurts but nothing like RA. I am so sorry that you have had so much unbearable pain. As for Martine and perhaps you have an ally for the future when you're less than robust. I do hope you feel better soon. xxx

Anonymous said...

This is one of those very, very rare occasions when it can truthfully be said that "I know how that feels".
(I qualify that because usually the people who say that don't have the vaguest idea of how you feel)

Those long dark hours, lying in bed unable to sleep, with tears rolling silently down ones cheeks, having had a stomach full of every damn thing the doctor's ever prescribed, attached to a TENS machine that's barely doing anything . . . . and still that incessant throbbing in the joints.
I know how that feels.

Having to cancel a day's patients because I can't bend my fingers or wrists, let alone hold a dental instrument . . .
Having to give up my profession because I was losing so much strength and dexterity I was terrified I'd do something dreadful to a patient's mouth . . .
The nasty, nasty drugs that barely hold the damn thing at bay . . .

The pain from active RA is the worst I have ever experienced and I really hope that this flare eases quickly for you.
Begone RFA!*

* the disease was quickly christened thus in our family; I'm sure you can work out what the F stands for

Optimistic Existentialist said...

I am so so sorry and I really hope they can someday find a cure or something that rids you of the pain!

Anonymous said...

Even hard asses have their moments! I have seen the disease through my Aunt who dealt with it with such grace, when I knew she was suffering so. Hope you get some relief soon.

Joanne Noragon said...

How kind of your office manager to graciously rescue you from yourself. You are loved, so just be tough and carry on.

megan blogs said...

A dear friend of mine has RA, and when she has flare-ups, it's bad. I never used to cry in front of people, either, but after breaking my leg, i find i can cry more easily now if i need to cry and i care a whole lot less if anybody's watching. Not that i feel 100% comfortable snottering in front of them, but even i had to smile at myself when i was in the ambulance with my broken leg and unable to cry. I tried, really i did, squeezed out four tears, then told the EMT, "I'm sorry, i just can't cry in front of people."

The young man looked incredulous and said given the extent of my injury, he couldn't see how i could help from crying. And that's when i smiled. How ridiculous for me to forbid myself to cry when i was in obvious pain. What, did i think it'd make me look bad, that my tears would cause him to look at my face rather than my twisted leg?

Still hard for me to let go completely, but at least now i can a little bit.

Sarahf said...

I'm sorry you're in so much pain. Crying is a good way to deal with these emotions, frustration and anger can so easily turn into bitterness, I always think a good cry gives us a better chance of avoiding that.

8thday said...

I can't imagine what it must be like to deal with chronic pain. It is one of my greatest fears.

But after dealing with breast cancer I have finally learned that crying is not being weak and needing help from loved ones is not being a wimp.
It is being fully human.

I hope that whatever has caused this flare up will dissipate quickly. I will be sending calm and healing intentions westward.

The World According To Me said...

I hope the pain leaves you and I'm glad Bing has been making you sandwiches and soup. There's something comforting about cheese sarnies and tomato soup.

Karen M. Peterson said...

I'm so sorry you have to go through this. I hope you feel better soon.