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,

Lina

 

 

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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.

feeling-better

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,

Lina

 

 

#WigginOutOverMPNs

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!! https://www.facebook.com/lina.mpn

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

Until next time,

Lina

Blood Cancer Awareness Post 5: White Blood Cells

Yesterday we talked about red blood cells, and today we will talk about white blood cells. 

whitecells

White blood cells, or leukocytes are the cells of the immune system. They are what helps your body to fight infection and foreign matter.

The most common type of white cell is the Neutrophil. Neutrophils live in the body less than a day, so your bone marrow is constantly making them to protect you from infection. Neutrophils are the first responders for microbial infections. High numbers of neutrophils are seen early in the onset of infection.

The next most common type of white cell are Lymphocytes. There are two main types of Lymphocytes. T Lymphocytes (or t-cells), which help regulate the function of other immune cells, and B Lymphocytes (or b-cells) which make antibodies. Antibodies are the proteins  that target bacteria, viruses and other foreign matter in the body.

The final three types of white blood cells are monocytes, eosinophils and basophils.

Monocytes have longer life spans than neutrophils, and are responsible for presenting pieces of pathogens to t-cells so that they will be recognized later.

Eosinophils deal mainly with parasitic infections. You also see large numbers of eosinophils during times of allergic reactions such as hay fever, or hives.

Basophils are also present during times of allergic reactions and are responsible for releasing the chemical histamine.

This is just a very brief overview of the general function of white cells, and their jobs. We will talk more about them as we get more into blood cancers later in the month!

Tomorrow we’ll be talking about my personal favorite blood cells, platelets!

Until tomorrow,

Lina

Blood Cancer Awareness Post 4: Red Blood Cells

Yesterday we discussed Blood Plasma, today we will talk about Red Blood Cells.

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Red Blood Cells, (RBCs) also called erythrocytes, are the most common type of blood cell. Like all of our blood cells, RBCs originate in the bone marrow. They are flexible, oval shaped cells which carry oxygen and CO2 around the body. Hemoglobin, an iron rich protein, is what makes carrying oxygen through the body possible. It is also what makes your blood red. Hematocrit, is the percentage of whole blood that is made up of RBCs.

The production of RBCs is triggered by a hormone which is produced in the kidneys. This hormone tells your bone marrow to produce immature RBCs, which then spend about 7 days, maturing in the marrow. After they are matured, RBCs spend about 120 days in the system.

There is a delicate balance to all blood cells in the body, each type of cell has a proper range. When these ranges get out of whack, that’s when issues arise. Below is the averages used by my lab for each different blood component. Later we’ll go into more detail on what to pay attention to on a CBC.

blood counts

That is all for today, tomorrow we’ll be talking about White Blood Cells!

Until Tomorrow,

Lina