Monday, November 25, 2013

Am I Cheating On My Rheumatologist?

Well, since my next question is which one, I guess that answers my question.

So here’s the thing.

I have an appointment in August with my rheumatologist back in Michigan.  We made it for a year after my last appointment with him, at his suggestion.

But now I am seeing my new rheumatologist.

But the other day my old rheumatologist’s office left me a message that my lab work is due.  The last time it was due, I happened to have just had an appointment with my new primary care doctor, so I forwarded those results to my old rheumatologist. 

But now I don’t know what to do.  I am not sure where I would even go to get the labs done, and my latest labs from my new rheumatologist don’t include the labs that my old rheumatologist wants.

Is anyone else exhausted?  I’m exhausted.  This is an exhausting situation. 

I have a soft spot in my heart for my old rheumatologist because he was the one who diagnosed me.  We’ve been through a lot together.  He’s the longest “relationship” that I’ve ever been in with a member of the opposite sex.

But my new rheumatologist is a breath of fresh air.  She is young.  She is thorough.  She believes that prednisone is not a long term solution. 

So I am stuck between a rock and a hard place, and I feel slightly selfish that I am dangling myself in front of not just one rheumatologist, but two. 

My old rheumatologist didn’t just want to cut me loose, and wanted me to have the ability to see him again if I needed to.  But I guess I forgot the responsibility that comes with it, which is blood work every two or three months. 

I don’t even know how to broach the subject with my new rheumatologist.  Hey, could you order these labs that my old rheumatologist wants?  Awkward!

So do I cancel my August appointment with my old rheumatologist and effectively cut the cord? 

Or do I try and keep up the charade in the hope that no one will notice?

This is a tricky situation because of the fact that I moved, and that’s the reason I needed to find a new rheumatologist, not because I was doctor shopping for a new rheumatologist for the sake of it. 
It’s amazing how tied and beholden to we can feel to our medical team. 

I guess that’s why it’s so hard to let go.

Tuesday, November 19, 2013

Operating With A Serious Spoon Deficit

Lately I have been operating with a serious spoon deficit.

For those who don’t know, the idea of the spoon theory is that someone with a chronic illness has a limited number of spoons that they can use each day, and once those spoons are gone, they pretty much can’t do anything other than rest.

These days, I have lists of things I have to do that never all seem to get done when I want to get them done. 

People without chronic illness don’t understand, and they don’t realize that it literally means I could be out doing something and suddenly feel sick and like I have to lie down.

I’m running on fumes.  Less than fumes.  Not even on reserve.  My reserves are gone.

I can literally be stopped in my tracks.    

And it has caused me anxiety when I am not close to home but realize I am running low on spoons.  How will I get home?  Will I have to find a cab instead of the subway or bus?  Can I keep from getting sick, regardless of the mode of transportation?  Can I walk the half a block from where I get dropped off until I get into the apartment building?  

I don’t have copious amounts of energy.  I have to pick my battles wisely, and sometimes bow out of battles altogether.    

And this state of affairs bothers me a lot.  I don’t want to have limitations.  I don’t want to say no to things.  But I don’t have a choice. 

For most of us with chronic illness, our days are variable.  Some days are good – we have more energy and less pain – and some days are bad.

Some days all my spoons get me is out of a bed, a shower, and breakfast.  Some days – rarely – it’s like I am my healthy self again. 

For about the past two months, I constantly feel like I am coming down with something.  I get a cough, my throat hurts, I spike low-grade fevers, I get these weird skin rashes.  This is my immune system telling me it’s time to take a break.  But I can’t really.  So I buck my immune system, but I can’t buck my lack of spoons.

When the spoons are gone for the day, they’re gone.  And I can’t bank them from days when I don’t use that many.  It’s always a finite number of spoons. 

Say I start the day with 12 spoons.  On a day that I have school, my spoon count would look like this:

Get up – 1 spoon
Eat breakfast – 1 spoon
Get dressed – 1 spoon
Bus – 1 spoon
Subway – 1 spoon
Train – 1 spoon
Walk to class – 1 spoon
Class – 1 spoon
Eat lunch – 1 spoon
Class – 1 spoon
Class – 1 spoon
Walk to train – 1 spoon
Train – 1 spoon
Subway – 1 spoon
Bus – 1 spoon
Dinner – 1 spoon
Get ready for bed – 1 spoon

Count that.  That’s 17 spoons right there when my allotment for the day is 12.  Now wonder I am so exhausted all the time.

It’s stunning for me to realize how little my body can actually handle.  But it makes total sense…to me…at least…

It’s easy for people who aren’t chronically ill to be judgmental and use terms like lazy, aloof, or uncaring.  But those characterizations couldn’t be further from the truth.  Like I said, I would give anything to do everything I need to everyday and not have to take time off after a particularly hard or busy day. 

But that’s not the reality.

If you are not chronically ill: How much of your day would you actually get done if you only had 12 spoons and every activity costs you a spoon? 

Friday, November 15, 2013

Patients For A Moment: What Do You Do When You Can’t Keep Up Edition

This month, I asked people what they do when they can’t keep up.  I didn’t submit this month for that very reason, but there are some great posts from people who did:

Iris Carden from, Sometimes, it is Lupus, asks the question, “when did I last keep up with anyone or with anything?” in the post Not Keeping Up.  She makes a good point that we can’t beat ourselves up, and that for a lot of us with chronic illness, not keeping up has become a way of life.

Rachel, of Fluted Cups and Ampersands, in the post, Keeping Up, refers to herself as a Lifetime Original Movie, and suggests that she deals with falling behind just as she does any other negative emotion.

Duncan cross hints at the deeper meaning of this month’s question, which is the intangible, emotional aspects of what it means when you can’t keep up, in the poignant post, I Grieve.

From Lifestyles of the Ill and (Mostly) Blameless, Shruti talks about what life is like now that she has gone back to school, and the time suck that comes from balancing school and managing chronic illness, in the post Breathing Underwater.  I can totally relate!
The last line of Ms. Rants’ post, Handling the “too much”, says it all: “Instead, I do what I can to have the best life that I can within those limitations,” over at the blog Chronic Rants. 

Barbara Kivowitz, of In Sickness As In Health, talks about having illness post-traumatic stress disorder (PTSD).  When her pain increases, she goes to a place of never and always, in the post, When It Just Gets To Be Too Much.  While I think it is important to try to not operate at extremes, it’s hard to stay rational when the pain comes flooding back.

In the post, Strategies for Coping During Crazy Times, Migrainista Emily offers practical suggestions, such as asking for help, in times when you can’t keep up. 

Abigail Cashelle, over at Hidden Courage, who is going through several life changes,  also offers up practical tips, in the post, PFAM November 13: When You Feel Like Giving Up.

Jamie Valendy, Chronic Migraine Warrior, offers a poem, in the post, When Everything Is Just Too Much.

Thanks to all who submitted posts for this month.

If you didn’t submit a post but have a related one, please feel free to link it in the comments – only related posts, though, please.

Next month’s PFAM will be hosted by Abigail Cashelle at the blog Hidden Courage.

Also, I am in need of hosts for every month of 2014, so if you are interested in hosting, please e-mail me at