Monday, May 11, 2015

Throwaway days...

No, I don't mean trash, although getting rid of one item a day to declutter our houses is probably a good idea. I'm talking about those days where those of us with chronic illness have to stay in bed or on the couch or in the recliner and miss out - a throwaway day.

The throwaway day is gone forever and we have many of them; typically after exerting ourselves the day or two before and that includes any events where we might have had fun! It's a constant balancing act.

On my throwaway days, I am usually in bed, in pain, exhausted, and with various symptoms from either my Lupus, Sjrogens, gastroparesis, fibromyalgia, or all of them. Pick a poison for there is no rationale. Could I have a virus? Sure. Could I be getting stomach bug? I guess so, but, most likely, it's just one of those days that go down the rabbit hole for no apparent reason except my chronic ailments.

I hate them.

Yeah. I'll say it again. I HATE THEM. But that doesn't make me stop wishing for a better day tomorrow and getting myself up and out again. I'm always optimistic yet cautionary as I move about my days. Monitoring myself is difficult when there are so many things going on 'behind the scenes.' But I do it anyway for I have life to live, people to see, places to go, and so many things I want to do.

I still haven't scheduled the camera test - the one where I fast for nearly 24 hours and then swallow a big pill with a little camera in it to scope out my small intestines. I'm scared. There are a certain percentage of people whose cameras get stuck and have to be removed surgically. With everything that's happened to me, I fear I will be THAT one.

But I will do it. I always do and I'll hope the results give me better answers to manage day-to-day.
Please don't throw away your days if you don't have to. Bank them for me and others with chronic illness. We will gladly take them off your hands.



Monday, April 20, 2015

Why cry?

Why cry? It's normal and healing, right? It releases toxins in the body. It cleanses our soul and releases stress, anxiety, anger and sadness. It's normal.

Perhaps we don't cry enough, being taught that it is a sign of weakness. But we also cry at happy events when our emotions are triggered to new heights. Some of us cry when we laugh long and hard. I know I do and I don't know where it's coming from.

According to an article in Psychology Today crying can be extremely healing with one caveat: If we self-criticize while crying our eyes out, it does no good at all. That's why we all know some people who cry and cry and cry and never get any better. They are telling themselves negative messages like:

"I'm a loser and that's why I didn't get the job."
"My boyfriend left me because I'm fat and stupid."
"I don't deserve to have any friends."
"I'm just too sensitive."

Instead,  the article reminds us, "speak only kind words to yourself" when you're crying such as
 “I’m sorry” and “I’m with you” and “I love you." We don't say these things to make us stop crying we say them to be compassionate to ourselves.

What a concept! Be compassionate to ourselves.

So many of us are empathetic with others, we forget to do the same when we need it. We berate and negate our feelings and stop crying, especially in public.

The scientific community is studying our tears. In a research project completed by Lauren Blysma, a PhD student at the University of South Florida in Tampa, she and her colleagues describe what we should and shouldn't do around someone who is in crying mode.

  •  Be aware that if you do nothing, you can make the crier feel worse.
  • Try to do something supportive. What that is depends on the situation and how well you know the person, For example, hugging someone you aren't very close with might not be appropriate, while simply listening in an empathetic way would be suitable.
  • Don't assume you know how to comfort them. 'The less intimate the relationship, the more it is appropriate to begin by asking how you can help and be supportive.
  • Know that criers who tear up in a very large group generally feel more uncomfortable than those who cry in front of one or two people they're familiar with. But even in a large group, the criers welcome support from those they didn't know well.
I've participated in drum circles and find them so empowering and healing. How about we form a circle of tears and just let it all out! We can drum at the same time if we want but it's a different kind of "sweat lodge," don't you think? We expel the bad through good old fashioned crying and it's not as hard to build and bear like a traditional and viable Native American sweat lodge. 

Who's with me?


Monday, April 13, 2015

Tangled webs...

Oh what a tangled web we weave, 
When first we practise to deceive!
Sir Walter Scott, Marmion, Canto vi. Stanza 17.
Scottish author (1771 - 1832) 

Most often mistakenly attributed to William Shakespeare, the above quote is one that makes so much sense in such a lyrical way, I used it so often in my household when I suspected my children were lying that they would yell: "Stop it!" Lies can certainly catch you dead in your tracks. And when a habitual liar becomes older and somewhat forgetful, they can't keep their lies or their truths straight. 

Be honest, we say; then you can never get caught in a lie. But it's easier said than done when 'white lies' are so prevalent and doctors do not want to disappoint their patients. Did I say 'doctors?'

According to an article in The Huffington Post, here are some lies doctors tell their patients:

"I've seen this hundreds of times."

This one may be said by your doctor as they try to not raise their eyebrows or shake their head in dismay at the huge, scary lesion you are presenting in the office. What they're really saying, though, is maybe they've seen this in "How To Stump The Doctor" articles in journals

"This is the best day ever."

You should know that this is standard doctor talk for, "Holy crap. Can one more thing go wrong with this day before I can get out of here?" If you hear [a doctor] say "This is the best day ever," know that [he/she has] plastered on a game face just to make it through the day, people. The best thing to do when you hear this phrase is to just nod understandingly. Seriously.

"Everything's going to be all right."

Now, when [doctors] say this, [they] don't really mean to lie. In fact, in [their] hearts, [they] hope and pray that this is true. [They] want to believe it in [their] core. [They] usually say this after [they] have been the bearer of bad news: a pathology report that reads cancer; an X-ray that shows a problem; an unusual reaction to a medication. [They] believe it when [they] tell you that it's going to be all right. [They] really do. But sometimes [they] have no way of knowing.

"I'll be done here in 20 minutes."

This is the common time frame used by the surgeon in the OR. This lie is spoken to the nurse who hasn't had a break in four hours and wonders how much longer her bladder can wait. It's a lie spoken to the supervising nurse who wonders if she needs to call in the night shift of technicians and nurses so the surgery can be finished safely. This lie is also told to the anesthesiologist who wants to know how much more sedation the patient needs to tolerate the procedure. The truth is: Finishing surgery is like driving in Friday traffic at 5 o'clock. [Surgeons] hope they'll be done in 20 minutes. [They] think [they] might. [They're] telling the Surgery Gods that [they], too, have a full bladder and an empty belly. But [they] are kinda just hoping. And praying.

"I'll send a note to your referring doctor tonight."

This lie is sort of like the one we all tell ourselves, "I'm going to eat more vegetables. Starting now." Instead, [doctors] are so tired and hungry when [they] get home that [they] have a cold bowl of cereal because [they're] too spent to throw a bag of veggies in the microwave. [They] have the best of intentions to send that letter to your doctor. And it will get done eventually. Honest. But give [them] about a week. OK, two.

"This won't hurt a bit."

Oops. Sorry. It does hurt. A little more than "a bit." But if [your doctor] told you it would hurt like hell, would it be any better for you? Doctors don't think so. That's why [they] all keep saying this. What [doctors] should probably say is the real truth: "This won't hurt me a bit."

"You're making progress."

The truth is, maybe you are. And maybe you aren't. What [your doctor] really means is, "Thank goodness you're not backsliding." [Doctors] mean that, despite the disease, despite your continued smoking, despite the serious injury you had, there is a light at the end of the tunnel. [They] can see it, even if you can't. The lie, though, is necessary because [they] thought you'd be out of the tunnel by now.

"My patients need me."

Hmmm. I'll bet you're surprised at this one. It's kinda true. As the article's author, a doctor herself, states: "We need you, dear patients. We need you to remind us of why we all went into medicine in the first place. We need you to remind us of our beloved grandmother, our great uncle, our second grade teacher. We need to be able to love you and show you compassion with all our heart. We need the connection that comes with true healing."*

* * * 
Interesting stuff, no? I had an almost hilarious session with my therapist the other day where she couldn't stop fidgeting and turning her fan on and off and talking fast, etc. Finally, we figured out that she had indulged in her first cup of caffeinated coffee in 25 years and she literally couldn't sit still. She didn't remember what I said. She didn't remember what she said; but because I recognize that she is human and we have a good relationship, she actually made my day. We laughed and joked and I realized how very like me she is - good days, bad days, and all that happens in between. 

What can we learn from this? We need 'keepers,' those doctors or therapists who keep grounded in what is the human condition. We need less lying and more honesty but we can forgive the occasional lie or gaffe if the human doctor before us is in tumult of his/her own. What we can not forgive is a medical practitioner who is patronizing or arrogant and lies just for the sake of it. 

The last thing my longtime doctor said to me before I was diagnosed with Stage 4B Hodgkins Lymphoma and Lupus was: "You're a normal 36-year-old woman. Go live your life."  He lied. He missed the diagnoses. His radar was completely off that day, week, month. And just three weeks later when I died and was brought back to life, he asked to be involved with my care. I told him to go to hell. Some lies are just too big to be forgiven. 

Nowadays I tell all my treating doctors not to tell me what they are going to do to me. For example, if they're going to stick the big needle in my back, just go ahead and do it. I don't need a pre-warning because then I tense up. I wear music headphones when procedures are going on. I don't want to chit chat with the attendings or nurses or anyone - I want to go to my zone out place. In clinical terms, I disassociate. It protects my psyche and I don't have to watch out for any tangled spiderwebs. 






*Credit: Starla Fitch, MD, is a practicing oculoplastic surgeon. Dr. Fitch is also an author, professional speaker, and certified life coach. She has a passion to help those in the medical field suffering from burnout. Her new book, Remedy for Burnout: 7 Prescriptions Doctors Use to Find Meaning in Medicine, is now available.



Thursday, March 26, 2015

Lost in space...

"Danger, Will Robinson. Danger!" I wish I had Robot from the sixties television show Lost in Space to warn me when danger was near, like when I'm going to get smacked in the back of the head with yet another medical emergency.

Since I've been a 'professional patient' for 18 years, you would think I could easily recognize warning signs. Nope. It's always like an earthquake; a shattering of what I thought was a body working well.

It's like being lost in space ... surrounded by blackness, grabbing at stars or comets or flying objects that aren't within my reach. I think of George Clooney in Gravity letting himself come loose from the spaceship and slip, sliding away. It's somewhat beautiful yet scary as hell.

Last week I was hospitalized for internal bleeding. The source is as yet unknown and further testing is scheduled. I also found out yesterday that in addition to having Lupus and gastroparesis, I have Sjrogen's Syndrome. I'm still trying to wrap my head around that one.

So while the doctors toss out names of tests, medicines and supplements, I shut down. When family and friends wish me well or offer comfort, I shut down. I can no longer hide my disappointment in my ongoing poor health. I was once vital. Now I am idle.

Chronic illness is a creepy, crawly thing that should come with warnings all over it yet there is still so much we do not know, particularly about autoimmune disease. To read that Sjrogen's is tied to lymphoma made me gasp, Of course I suffered the stage 4B cancer years before I found out I have Sjrogen's but there it is - in black and white for me to comprehend

Today, I just can't. Call it a pity party or whatever you choose. I feel badly for myself and angry at my body. Floating off in outer space looks pretty good right now.