Backtracking a little bit….

It came to my attention that I really haven’t given any information as to why I am blogging, and why I have chosen such a narrow subject about which to write the aforementioned blog

I’m Lina, a 24 year old Essential Thrombocytosis patient. Essential Thrombocytosis or ET is a Myeloproliferative Neoplasm (MPN). Basically it means that my bone marrow is extremely over-zealous about producing blood cells. Platelets in particular. I was diagnosed in 2005, and it has been a charming roller coaster ever since. Enough about me….now why I chose to whine in a public forum….

The short answer is…because I wanted to.. But the better answer would probably be that in the 6 years I have had this disease I haven’t really had much of an outlet to talk about it. My friends and family listen, which is nice, but sympathy really only goes so far. I attended a meeting in Chicago earlier this summer, and it was mentioned that other patients might enjoy hearing my perspective on things (as I would enjoy hearing theirs), so here it is. I hope that this will be helpful to others. If anyone has questions or would like to suggest a topic, feel free to leave it in the comments section.

Thanks!

The Infamous Binder

The Infamous Binder
 
In my first post with the MPN Research Foundation I wrote briefly about the binder that I take to every appointment. I have received several questions about it since then, and just thought I would elaborate on why I use it, and what I include in it.
 
First and foremost: I have NEVER been a very organized person. Just ask my parents about my bedroom or my school work as a child…yikes. After being diagnosed with ET though, and after my brief bout with apathy, I felt that my life was sort of tumbling out of control. I had to find a way to create some order to keep myself sane..ish. 
 
Not knowing about the disease, or how to manage it, I took control the only way I could think of. I did as much research as I could and organized every single piece of information I could get my hands on. That way, any minor changes would be seen by me, nothing would get by me and I’d be an active member in my treatment team. Even though I was not in direct control of the things that were happening to me, I could at least monitor them and that made me feel a lot better. This information all went into “The Binder”. 
 
The Binder is in 6 parts. I’ll go ahead and vaguely outline it a bit so you can get the general idea
I) Questions/Answers for doc
-Just like it sounds this section includes any questions that I have for the doc at the time..either about symptoms I’m having or a new article I may have read about treatment method, clinical trial etc. Make sure you have a notebook with you though to go along with your questions. You always want to be able to write down the answers. I made the mistake of not writing them down for a while and without fail I would forget the answer to the questions by the time I wanted to refer back to them.
II) New/Recurring Symptoms
-As new symptoms occur, I write them down and keep track of what they were, when they happened and how long they lasted. I find this to be helpful, particularly when I can link the symptoms to changes in  medication or blood count. Which leads me to section 3  
III) CBCs
-I get a copy of every CBC I have. This helps me to get familiar with my blood counts, what my normal range is, and how the numbers fluctuate as medications change.
IV) Medical History/Appt Notes
-I have my entire medical history including surgeries, medications, my current diagnosis and and changes there may be. I also like to have my appointment notes from my onc. It takes a few days to get them once requested, but it is very useful to have. I can refer back to the notes from a particular appointment and get clarification on something that was talked about, and compare the notes to previous CBCs and see the conclusions the team has drawn from the changes etc.
V) Scans/MRIs/CTs etc
-These come in handy if a doc asks “Have you had a (fill in imaging test here) recently?” You can say conclusively no or yes and what date. But honestly, I keep these because they’re kinda cool. I especially love the x-rays of my hips from when I had orthopedic surgeries…you can clearly see the outline of the screws in my hip…it’s pretty awesome…Yes, I am a huge nerd. Thanks for noticing 🙂
VI) Articles/Research
-These are good to have because as I have stressed before YOU are your best health care advocate. Doing research and learning what could be out there is not pushy, it is not needy. On the contrary, it is necessary, in my opinion.
 
This binder comes with me to the oncologist, to the GP, heck…if I ever think it’s useful I’ll probably take it to the dentist with me. I have thought about carrying my binder with me at all times. For convenience sake though, I did away with that idea and made a digital version of my binder. I keep it on a portable USB drive that I have in my wallet at all times. I update it frequently to make sure that it is current. Having a chronic illness, you never know what may happen, so it is best to be as prepared as possible.
 
I will say it once again: You are your best advocate. If you do not stay on top of your health care, then who will?

And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom. ~ Anais Nin

Invisibly Ill

Hey all, below is a post that is very significant to me. The issue for the Chronically Ill of “But you don’t LOOK sick…?”

MPNs are “Invisible Illnesses”. There really are not many outward signs that show we’re sick, but boy do we feel it. I don’t know about the rest of you, but , no matter how I look, sometimes I feel like I’ve been run over by a truck. 

However well-intended the phrase may be, saying “but you don’t LOOK sick…” to a sick person is pretty insulting. The implication being that we are faking it or that it’s not real. We don’t look sick? Well…what does sick look like, pray tell? Should we all be emaciated, bruised, or limping? What does it take to be acceptably sick? This may surprise some…but not all sick people look alike. Shocking, I’m sure. (insert snarky eye roll here).

We all have good days and bad, but for the Invisibly Ill, the bad days often outnumber the good. Most of us, though are obliged to put on the happy face and get on with things. If we didn’t, we wouldn’t be able get much done. I often feel like I am two completely different people; the one on the outside, who looks just fine, and deceives everyone around her; and the one on the inside who is exhausted, and battered and miserable. 

I learned to put on the happy face real quick when I got my first “Grown-Up Job”. I started at my office as the receptionist, so putting on the perky, bubbly personality, however fake it may have been, became a part of my daily life. Fatigued, sick, headache? Didn’t matter. That smile was plastered on. Inside I might have been cursing the phone for ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick…you would not know. There are days though when I just can’t fake it anymore, my fatigue catches up with me and knocks me out. On those days, I tend to hear that dreaded “but you don’t LOOK sick…”. Also on those days my sarcastic side will often think(or sometimes say, depending on the audience) “And you don’t LOOK like a jerk..but I guess appearances can be deceiving, can’t they?”

Believe me, I am neither wanting nor expecting sympathy.  Understanding would be wonderful though. Yes, it’s true that we don’t fit the picture in most people’s heads of what sick should look like, but trust me while these illnesses may be invisible, we and our pain certainly are not. 

Please, think twice before telling us we don’t fit your image.

First Post/Background

At 18 I was a typical college freshman. Happily and healthily being the semi-irresponsible person I was supposed to be at that stage of my life. That spring I started getting lots of headaches and had HUGE bruises on my forearms. I went to my GP and after a brief side-trip to misdiagnosis-land, it was […]

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