I am tired.

Now, I know what you’re thinking. We all get tired. We get tired after a long work day, or a good workout, a busy week, or when you have a cold. But that’s not the kind of tired I mean.

I mean the kind of tired where you can barely make it from bed to the shower without needing a rest. The kind of tired where deciding what to wear to work that day is exhausting, and you need to take a break in between laying out your clothes, and actually putting them on. The kind of tired where even thinking about going out with friends after work scares you, because you know you won’t be able to keep up with them. The kind of tired where you have to decide which weekend outing you can afford based on your energy expenditure for the week. Hell, I missed a good friend’s wedding a couple of weeks ago because I could not work up the energy to get dressed, and get out of the house. That REALLY put me into a funk.

That’s ANOTHER thing that makes you tired. Feeling so down on yourself for being tired, or unable to participate, that you get more depressed. It’s an evil circle. One that’s very hard to break.

But break it we must. I’m not going to be that person who screams about “Mind over matter”. But…unfortunately…that person might be right. There is something to be said for the mental fortitude required to pull oneself out of a downward spiral. It is incredibly hard to come by, and can sometimes take weeks, or months to get ourselves there.

However long it may take, we must treat the upward motion as a victory. We must celebrate the small moments. Those moments are fragile, are fleeting. We have to enjoy them. Take the time to acknowledge the win. However small it may be.

Today I acknowledge that I got up and worked up the energy to write this blog. It has been a long time since I have felt both the motivation, and energy to write coherently. Small victory to some, I know. But I hope that this, however small, and personal, may resonate with someone else who may feel similarly to me.

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

Until next time,

Lina

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,

Lina

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…

STOP. COMPARING. SITUATIONS.

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,

Lina

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,

Lina

Good morning to all of you, dearest readers. I hope you are all doing well. I wanted to talk about a few things today – there MAY be a teeny tiny rant coming (be warned!!)…

First things first: Per my previous post, I have been trying to be more active lately, to attempt to combat my fatigue issues, and I chose Yoga as my activity. Have any of you been doing yoga with me? Or any other daily activities? I have found that on the days that I have done it I have truly felt more energized! I’ve been doing a 20 minute session with a trainer I found on youtube, and I’ve been feeling pretty good! Originally I was going to stick with once a day, but was inspired to try it twice/day to see how it made me feel…it’s amazing. My morning session is generally around 6am, before I leave for work – it’s made a significant difference to my outlook on the day, and to my physical self. Then I follow along with the same video when I get home from work. The relaxation that comes along with that 2nd round is just fantastic. I don’t talk much about my “muggle” job, as some may call it, but it can be stressful at times. Knowing that when I get home, I have 20 minutes of calm, smooth motions, and deep breathing, really helps me to forget the stresses of the day. I’ve been using #virtualyogaforMPNs to promote the e-vent (see what I did there? lol), so if you do happen to join in, please Tweet, or facebook, or Instagram using the hashtag above, so we know we’re all together!

Now – on to the rant portion. You’ve been warned!!

Lately I have seen an awful lot of “cures” and “homeopathic cancer treatments” being touted by random folk on the internet. Now, please do not misunderstand me. I am all for the benefits of herbs, or essential oils. Note I said BENEFITS, not CURATIVE PROPERTIES…important distinction. There is a lot to be said for mind/body connection – feeling good mentally, can help you feel good physically(See previous paragraph on yoga…). HOWEVER – this does not/should not eliminate one’s need to be followed by one’s physician. ALSO – before beginning any kind of health regimen, you should ALWAYS, ALWAYS, ALWAYS (Did I say ALWAYS…because ALWAYS!) consult your health care team!!

Now, I know that this is nothing new. Snakeoil salesmen have been around forever. There have always been people out there willing to prey on the desperate, and the sick. What irritates me the most about this, is just how easy it is for these people to spread this misinformation around via social media.

We all know how quick it is to “like” or “share” a post on Facebook. But it takes only slightly longer to do a bit of research and learn about these “cures” before you go splashing them all over someone’s newsfeed. Please, always do your research before sharing anything on the internet. Use your instincts – if it looks “too good to be true” it almost certainly is.

As much as I would love to see a panacea come into our lives, I have to admit – I’m not going to hold my breath on that. I will, however, continue researching, and being as diligent as I am able to learn about my own illness, my treatment options and discuss all of these things with my health care team.

OK, rant over – I feel better having gotten that off my chest. Phew. SO…#virtualyogaforMPNs is happening again this evening 6pm CST (Link to the video I have been using is in the first paragraph of this post), please join me! And please share your experience if you do join! I’d love to hear how it goes!

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

Until next time,

Lina