Primary Penny

By Maggie McCarey

                                                Doctor: KNOCK! KNOCK!

                                                Patient: WHOSE THERE?

                                                Doctor: HEPA

                                                Patient:  HEPA WHO?

                                                Doctor: Sorry, I can’t tell you.

                                                PATIENT: But I can.

A VERBATIM with MY PRIMARY June 12, 2013

(A VERBATIM IN PSYCHOLOGY IS A CLOSELY APPROXIMATED CONVERSATION WITH A CLIENT AS WORD-FOR-WORD AS YOU CAN REMEMBER IT.)

HERE GOES

Primary Penny:  Hi Maggie. It must be a year later.

Maggie:  Really? Seems only a few days ago. How ar……..

Primary Penny:  Let’s see. You don’t do weight. Did we get a blood pressure?

Maggie: No becau…

Primary Penny:  Why not?

Maggie: Remember three years ago my blood pressure goes 180/over OMG when I am here.  You wanted me to go on blood pressure medicine and I agreed to if you gave me three weeks to monitor my own blood pressure.  We made sure my machine was correct by calibrating it to your office machine and three weeks of digitally recorded information showed that I have a normal blood pressure rate in a non-flight or fight situation.

Primary Penny: Well, that was then and this is now.

Maggie: Right. It is still normal.

Primary Penny:  And how do you know that?

Maggie:  Ummm.  I take it at home?  I have brought you a list of blood tests that I would like you to test if you…….

Primary Penny: Squaaaaawk!!!!!!!Why would we do that since there is no cure for a,,,a,,,you know…your disease?

Maggie:  There is no cure but there are many people with l-i-p-e-d-e-m-a who work with their doctors because collectively we have learned a-l-o-t the last few years.  Every year you take tests that give me very little information that I need…

Primary Penny: Like what^^&&^%^%?!!!!???

Maggie: Like cholesterol.

Primary Penny:  YOU DON’T THINK CHOLESTEROL IS IMPORTANT????

Maggie:  Of course, I do.  But every year it has been well within the normal range, which doesn't fit with any of your beliefs about being overweight.  You don’t explore that contradiction.  I am not dying from high cholesterol at the moment.  I am dying from lipedema.  Every year. I come here and you spend all of your time and my money ruling out cancer and high blood pressure.  If I had diabetes you would test my blood sugar and a lot more.  We would have an entire conversation about my diabetes.  Now I am bringing you four blood tests so that we can have a conversation about lipedema.

Primary Penny:  FINE! (Like a kid who just got a list of chores.)  What is the first one?

Maggie: The first one is the C-reactive protein to measure my inflammation level?

Primary Penny?  And what good is it going to do for you to know that?

Maggie:  Us.  It will help us to measure inflammation in my body with a base line.  You know how every other disease is determined to be under control.

Primary Penny:  So if inflammation is high, what can I do about it???

Maggie:  You can recommend an anti-inflammatory diet and you could give me a list of foods that are alkaline.  You can tell me  to measure my ph balance regularly, not unlike a glucose reading for a diabetic, and then you could take the blood test again to see if we are reducing the inflammation in my body.  You already prescribed Wellbutrin, which are anti-inflammatory as well as an anti-depressant. Herbs work well against inflammation.  You could tell me to go to Starbucks and buy Trite Green Teas.

Primary Penny: Okay, what are the other three?  I told her the other three. I just can’t order these tests for you.  Your insurance company won’t pay for them without a reason and since they don’t know about lip..lipedema….

Maggie:  But isn't it your job to run tests based on my symptoms?  Don’t you need to hear my symptoms?  Those tests rule out something?  They are created to measure something, right?  What about this one?

Primary Penny:  I would use that test to measure hypoglycemia. 

Maggie:  I have periods where my sugar drops.  If I don’t eat I can go to a point of no return with a pounding headache.  I have always wondered if I have hypoglycemia.

Primary Penny:  Well it might not be low blood sugar.  That could be a lot of other things.

Maggie:  Well, there you go.  Test me.  Rule out possible illnesses based on my symptoms.

Primary Penny: (getting into it).  It also tests myalgia….

Maggie: MYALGIA…OMG! I have fibromyalgia. It is in your notes.  Yes, test this for me…

Primary Penny:  Yes these are tests I can absolutely test you for….Tell me what herbs you use to bring down inflammation.  She wrote them in my official records.  SAWEET!

                                        AND THERE YA’ GO

She wheeled me out of her office down two hallways to the receptionist desk.  I really do like her BECAUSE she can and does listen.  She NEVER once has looked at her watch when I see her. And, best of all, I don’t think she is put off by fat.  No wait.  That’s second best of all. She studied enough information to diagnose me with lymphedema and lipedema.  I like that best about her. (YOUR PRIMARY CAN GIVE YOU A DIAGNOSIS).

Maggie: See ya' next year!  I waved at the door.

Primary Penny:  Oh no. I will see you when the blood test results come back.  She smiled, in charge.

Maggie:  Yes ma’m.  (progress)

Flip the switch & go with the flow

By Tatjana van der Krabben

For June Awareness we initially set up a suggestion box. Of course we were free to throw in suggestions of our own and Maggie came up with promoting self-love. That one matters big time, so we stepped on it. Tirelessly Maggie came up with a new quote, picture or clip every day with a little exercise attached to it.

My wake-up call telling me I still have a long way to go with respect to self-acceptance came with the exercise to write down what we stopped doing because of lipedema. I wrote down 'dancing in public'. I immediately felt like an idiot. Why would you stop doing something you love to do, while physically still able to do it? Why? Because of people staring? What they might think? Because you don't like the attention. Oh, come on! Time to flip the switch.

With my summer vacation booked I got ready or some serious R&R on the beach. So no drama about mentally getting ready. No: what does a woman need to make herself comfortable?

First a little something to read: Inferno by Dan Brown. But I also intend to bring my nerdilicious book on fossils. It's been collecting dust, but not by choice!



Next I figured I needed a new mask and fins for some serious snorkling. My old mask was leaky and my old fins looked like I wrestled with sharks. Comes from using them to cross pebble beaches and get passed rocks, so nothing dramatic. Although I did swim around sharks a few times! I went for fabulous pink ones. I'll be very, very sorry to use them on pebble beaches!




I wanted a free flowing summer dress. One of those cute maxi dresses that are now out there. I love those and they have their obvious benefits. I had some trouble finding a nice one in my size. While roaming the largest department store in my town for THE dress, I stopped in my tracks. I spotted a lovely pink dress. Pink. In-your-face-kind-of-pink. As I zoomed in on the dress I spotted a 'safe' blue version as well. Not free flowing, not exactly wallflower-proof decor. What to do? I decided to try it on. I loved it! I admit, I also tried the 'safe' blue one. And decided against it. Same dress, same print, but just lost its appeal in navy blue. That's how I ended up with a more figure hugging dress.

Please excuse the wheat belly in this picture. Lately I've made one exception after another due to stress and a busy schedule. I'm paying the price. Nothing a good vacation can't fix: a good swim every day and all the time in the world to pick my food. If you look at this picture you probably wouldn't have guessed I have lipedema. However, I originally come from an early stage 2.

The universe apparently intended to have a firm chat with me. The very week I decided I would dance the first opportunity that came along, I had a party. I had forgotten about that. Still, a promise is a promise. If you won't even keep a promise to yourself, what is left?

As it turns out they made it real easy. Totally my kind of dance music. Me and dance music go back a long way and it was pleasant to be reacquainted. If someone stared: I didn't notice. And I don't care!

All these events took place in little over a week. I was beginning to feel more daring. On Lipese Challenge* I made another promise: for this vacation I would not dig up an outdated bathingsuit, nor doubt myself in front of a mirror whether I could 'pull it off'. No, I intended to get myself a nice new tankini.

I tried a few different ones and ended up with a model in a rather tight fit. Realistically I had to focus on keeping the girls secure and decent. I'm not exactly flat chested. That's how I ended up with this model. The legs...stick out, regardless of the fit on your body. For a split second I was in doubt about the bikini bottom. But when considering going one size up, they told me I would lose it swimming. The shop assistants were brutally honest (about the girls' tendency to escape, the fit really, not my legs or size) when trying on different models, so I took their word for it. Bright blue: can't miss me.

All it took was someone stirring things up and a few positive experiences. Just like that. I had a chance to sleep on it and I'm not the least bit sorry I got a dress and tankini that follow my contours. I know I picked the right items. My final challenge for self-acceptance was having my picture taken for this blog. That's still a sore point. See the criticism I put in on my waiste? Well, I saw it through and posted that picture. Also, I see what I'm doing here. I'm leaving the fussing in this blog. It's a nice marker of my progress and what the next step should be.

I hope June Awareness month 2013 will be a lesson to myself on a bad day or during a bad week. There will be moments like that again, too. When a shop assistant is less professional and kind enough to point out exactly those things you don't feel comfortable about. Or someone will stare and you notice. Or something else. I hope I will realize again it's them, not me. Like they are all perfect...

*Facebook group by Lipese