My relationship with “Maybe…”

It’s a simple enough word. Not quite yes, not quite no – just lands somewhere in the middle. I find myself responding to event invitations with this word on a fairly regular (read: nearly always) basis.

I almost NEVER go out after work, because it is incredibly rare for me to have enough energy left at that point in the day to be any fun. Weekends are generally my only opportunity to have a social life, and even that is rare. Saturdays are the only day I feel confident in committing to, as a rule. I know that I can have Sunday to recoup if necessary. I always feel so guilty when I turn down event invitations – I get eye-rolls, and “Yeah, we figured you wouldn’t want to come”. What people don’t understand is it’s not an issue of not wanting to, it’s an issue of knowing that, unlike most people my age, I have to conserve what little energy I have, so that I can meet my responsibilities.

It’s difficult to explain to people who don’t experience energy (or lack there of) in the same way that I do. I get it, I’m only 31. There is seemingly no reason for me to turn down opportunities to go out and have fun. Trouble is that I do not have the same energy levels that the average person does. There are several analogies for energy…the spoon theory for one, my own sandbag theory of energy… but suffice it to say, I and my fellow MPN patients know that fatigue is the number one symptom that we have to deal with.

For any non-patients out there imagine the following: No matter how much you sleep, you never feel rested. When you do get the opportunity to sleep, it won’t come easy. All day you feel so tired, yawning, struggling to make it through the work day, only to get home, and the moment your head hits the pillow feel wide awake. Or better yet: You fall asleep instantly, only to wake up to pain a couple hours later, and then be stuck awake for hours after, trying to ignore the pain, but it is the only thing you can focus on. And this is Every. Single. Night.

This is incredibly frustrating for anyone, but especially frustrating as a relatively young patient, struggling to live life with their peers.

Long story short, I am tired. Tired of saying “maybe” all the time. Tired of being tired.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,





The Grant Review Process…

I don’t know about the rest of you, but I truly did not have a firm grasp on what all went into the process of grant money being awarded to a researcher. In my head I just thought “People with a lot more money than me, arbitrarily give money to someone, and hope for the best”. Rationally, I knew that couldn’t be all there was to it, but until recently, I didn’t have evidence to the contrary. That being said…

Back in June I was given the opportunity to attend the annual grant review session of the MPN Research Foundation. I was one of several other patients in the Peanut Gallery, along with MPN RF board members, and other influential people in the MPN Community. The review board itself consists of 8 members, with a variety of expertise, some researchers, some clinicians, some in the MPN field, some outside. The board was quite varied in opinion, and in background. The core goal for all was to make sure that the support offered by the grants from the MPN Research Foundation were going to most worthy applicants.

That is no easy task – this year alone there 43 applicants, after the Foundation sent out their Requests For Applicants (RFA). That is 43, incredibly detailed, complicated grants, with multiple goals (aims), all of which needed to be reviewed, and analyzed. The 43 applications were narrowed down to 23 which were under scrutiny at the review session in June. Each of these 23 grants was reviewed by 3 members of the review board. The 3 members were assigned the roles of either primary, secondary, or tertiary reviewer, and all rated the grant out of 10, once they had completed their review of each of their assigned grants.

Once at the round table, each primary reviewer presented the application, discussed the merits, or shortcomings of the grant. After that, the secondary and tertiary reviewers do the same, and the round table is then open for discussion, questions, or critiques. Once that is complete, the reviewers give their grades for the grant. Occasionally there is a large difference in the grades. When that happens, all of the reviewers have the opportunity to discuss the grant further, and see if anyone wants to change their ratings.

Once all the grants have been discussed, and grades given, the grades are all totaled and a final ranking is assigned to all. The top contenders will be notified when grants are official.

I’d like to thank the MPN Research Foundation for allowing me to join them for this incredibly educational event. I look forward to hearing about the grant winners, and their research over the coming months, and years!

As always, you are your own best advocate, if you do not take care of yourself, who will?

Until next time,


Meeting Expectations…or not?

Something I have noticed over the last decade of this ET adventure, is that people are very hung up on labels. I speak specifically of the label of “being sick” right now. Yes, I’m going back to “But you don’t LOOK sick…” again. It’s important to me. Get over it.

I have found that on days that I’m feeling my worst, but still looking “normal” I hear a lot of “Well you LOOK fine…” and the ever popular “Well you don’t look sick to me…” (because…you know…everyone is an MD now…). But then if I am not looking my best, I tend to hear people say things that imply I’m “putting on a show”, or faking it. So, I’m curious…which is it? Am I faking it when I DO look sick, or am I faking it when I “look fine”? At what point is my appearance:actual feeling ratio, acceptable to the general public. More importantly, when did the thoughts of the general public become so important to me? Why do I let it bother me?

Let’s use today for an example: Today I went out to watch a pre-season hockey game with M. This is a big event for me, for a couple of reasons 1) I have been feeling absolutely miserable for the last several days. To the point that I missed several hours of work, because of it. 2) I’d never been to a hockey game before…so it was really exciting. As I mentioned before though, I missed several hours of work because of it…then I went out and had fun? Maybe I wasn’t actually sick maybe I was faking it the whole time?

Oh wait…no I wasn’t. I think what a lot of people don’t understand is that in order to go out at all, or to function as a normal human being, I often have to sacrifice other things. For instance…Saturday, I did ABSOLUTELY. NOTHING. PRODUCTIVE. AT. ALL. There is no way that I would have had the energy to go all the way downtown, walk through the arena, and actually enjoy the event, if I had done anything yesterday. So…yes, I missed a few hours of work this week. I also gave up an entire day of my weekend on the off chance that I’d have enough energy to enjoy myself for a few hours. I know I’m not the only one who thinks about this. Know how I know? Google.


TLDR: Don’t make judgments based solely on the appearance of others. EVER. For any reason.

OK, I’m done ranting for now. This may have been somewhat disjointed, and for that I apologize. But I just needed to get that off my chest.

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,





Ladies and gentlemen, I’m sure we’re all aware that the month of September is Blood Cancer Awareness Month. In order to help raise awareness for our very rare family of diseases, I have started an event that will be ongoing the entire month. I am hoping to get participation – PLEASE PLEASE join me in #WigginOutOverMPNs every #WigginOutWednesday!

Please join me every Wednesday this month for #WigginOutOverMPNs Wear a funky wig, do a crazy hairstyle, even wear a silly hat! Whatever you choose to do, post a selfie on social media, using the hash tags #WigginOutWednesday and #WigginOutOverMPNs Help us raise awareness of this very rare family of blood cancers!

Add me on facebook and I’ll invite you to the event!!

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,


The Theory of Pain Relativity

Fairly often while talking to a friend, family member, or coworker we will find ourselves talking about our health, how we’ve been feeling lately, etc. Almost invariably, if the person I’m talking to knows about my situation, they will follow-up any complaints they may have had with “Of course, I know YOU have it worse” or “I shouldn’t complain, compared to what YOU’VE gone through” or similar…I have just one thing to say to this, and to all of the people out there who think, or feel these things…


I’ve said this before, and I’m sure I’ll say it again. Pain is relative to the person experiencing it. Period. End of story.

Your pain requires no validation. Your pain requires no proof. Your pain requires no apologies.

In the same way that someone else’s good day can not diminish your own good day, no one, including yourself, should ever make you feel inferior based on how you are feeling. We all get sick. We all have bad days. Comparing your bad day, to someone else’s bad day doesn’t mean anything, in the long run.

Endure the bad days.

Enjoy the good days.

After all, one could not exist, without the other.

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,


The Sandbag Theory of Energy

We all know that fatigue is one of (if not the) most prominent symptom of MPNs. I have struggled for a while to come up with a way of explaining it, that feels relevant to me. Now don’t get me wrong, I still adore the Spoon Theory, but I have another view to add as well now. 🙂


We all possess an invisible bag that we carry around every day. As we exert energy, sand is added to the bag, making it heavier, and heavier as the day goes on. The more strenuous the activity, the more sand is added. As the bags get heavier, we move more slowly. It makes each action we have to perform that much more difficult. On a good day the bags are only partly full by the end of the day. However, that also means that we didn’t get to accomplish much that day.

On the days that I am more active, I feel my imaginary sandbag getting heavier, and have difficulty moving as quickly as I’d like. These sandbags don’t just slow down physical activity. They can also bog down our minds. I often feel as though my IQ has dipped several points throughout the day . No matter what I do, I can’t shake the feeling of being weighed down, mentally and physically. The heavier it feels, the more exhausted I feel. Some days just getting showered, dressed, and driving to work can begin to fill the sandbag. By the end of the day it can be nearly impossible to muster the energy just to cook, and eat dinner. Some days the only thing I have the energy left for is to change clothes, and crash on the couch.

We all have good days, and bad days. It’s very easy to get frustrated when we can’t get as much done as we feel we should, but we need to accept that some days we will not be as strong, or as quick, or as sharp as we’d like to be. On these days we must cuddle up on the couch with a nice warm blanket, a cup of tea (or something stronger, if we’re so inclined) and relax. That sandbag is heavy, we’ve earned the downtime!

As always, you are your own best advocate. If you do not stand up for yourself, who will?

Until next time,


Failing at life…

So you may or may not have noticed…I disappeared. Again. DANGIT.

I think I need to stop setting unrealistic goals for myself. I always want to post good things here. Informative things, helpful things, useful things. Then I get so frustrated if I can’t think of “quality content” to write, then I rough draft, then I throw it out, then I get frustrated, then I procrastinate, then I get frustrated some more. Then somehow it’s 3 months later again…and I’m going through this cycle of apologizing for my absence. Again.

Yeesh. So…here’s the plan. I’m going to attempt to just do simple, personal updates weekly or bi-weekly, depending on how this goes. I will still go on rants from time to time. And I’m sure I will annoy more people with my dislike of the homeopathic “cures” crowd. (Insert snarky-humorous image here)


(Also…this isn’t mine. I found it on the internet, and it made me LOL. So I couldn’t resist).

I am also plotting for #MPNBCAM16 – be prepared!!

Also…today is day 2 of a nightmarish migraine. (please forgive the rambling) My freaking face was numb for 24 hours. I have basically been unable to human (yay inappropriate noun/verb usage) for 2 days. I am finally getting back to something that vaguely resembles normal.

Also One More Thing!!!

Ladies and gentlemen, it is time to nominate your MPN Heroes!! Follow the link below, choose your nominee (caregiver, patient, doctor, volunteer, you name it)! Nominations are due no later than 9/8/16, so you’ll probably see this plug come up throughout the summer!

Please note, I’m not asking for nominations for myself. 1st of all, I’d never do that anyway. 2nd of all, I am ineligible (…more on that later…maybe) I am just super excited about these awards, and really want people to get out there and nominate their Heroes!!!

Nominate Your Hero today!

I’ve said also far too many times in this blog. I blame the migraine.

I’m going to end this here.

As always, you are our own best advocate. If you do not stand up for yourself, who will?

Until next time,