I have been a terrible slacker lately, I’m very sorry! I should have written by now, but I’ve been sick, and tired, and whine-whine-whine. I will write again tonight. And more than just a sentence or two, promise!
Until next time (tonight…promise),
Lina
Tomorrow is #givingtuesday!
Please consider joining (sort of…) the MPN Research Foundation on Tuesday for a unique fundraising opportunity! Rather than hosting a large event, The MPN Research Foundation is offering you the chance to stay in and support MPN Research from the comfort of home!
What makes this even more exciting, is that if $5,000.00 is raised during #givingtuesday, an anonymous donor will be matching the contributions!
Tickets are $50 for one or $250 for tables of 6. For more information visit: http://www.mpnresearchfoundation.org/Giving-Tuesday+1#sthash.4AjqZCUC.dpuf
Until next time,
Lina
So, I found out Wednesday that I have been nominated for an award from wegohealth.com. Then I found out today that I have been nominated for the Best in Show: Blog award, AND also now the Hilarious Health Activist Award!!! Holy Cow!
I am so unbelievably flattered to be nominated! It is so humbling to know that my blog has touched people enough to warrant this nomination. Thank you so much!
Now for the shameless plug part – It would mean an awful lot to me if you might consider endorsing me for either or both awards, whatever your heart desires 🙂 If you will just follow this link, look for me (linampn) and click endorse, I would greatly appreciate it!
Than you all so very much!
I’ll be posting again very shortly (not another plug, I promise!)
Until next time, be strong, be assertive,
Lina
I am sure many of us have seen the daily Facebook posts during the month of November about all of the things our friends are thankful for. Don’t get me wrong. I’m happy that people are recognizing how blessed they are; that is a wonderful thing. My argument is that you should be thankful every day of the year, not just one month out of the year.
Now, I realize that sometimes it’s hard to be thankful. It is much easier to think of the negatives: the bad day at work, the argument with your spouse, the bills that need to be paid, or any of the other things that may be happening. The thing is, though, all of those negatives are what make the positives that much better. Without them, we would have no idea how good our lives really are.
Often, someone who has just learned about my health situation will say something like “Oh, I’m so sorry!” Well, I’m not. I’m not sorry about it at all. My ET has changed my life. Not all for the good, I’ll admit, but it has helped to make me who I am. It has made me a much bolder person than I was before I was diagnosed. It has helped me to see the brighter side of things more often, which has made me more able to see the things for which I am thankful.
I am thankful for my family, the people who have known me my entire life, and have supported me through all of my choices (good, bad or otherwise). They were there for my diagnosis, and treatment, and all of the other excitement that came along with it. Without them I don’t know what I would have done.
I am thankful for my husband. I was diagnosed just after we met in college, and even after seeing what I mess I was, he still stuck with me. I love you, M.
I am thankful for my friends. Even though I’m not much fun sometimes, and can’t go out as often as I’d like, they’re still there for me.
I am thankful for my dog and writing-buddy, Tesla. Whenever I’m having a bad day, not feeling well, he’s there. No matter how long I’ve been gone he is always happy to see me, and ready to greet me with a wagging tail and a slobbery kiss.
This is just the short list, but I am thankful for so many things in my life, and I am thankful for these things every single day.
Even if you can’t see it right now, there are things to be thankful for. My suggestion is to find the things in your every day life for which you are thankful. The girl at the coffee shop remembered your order. The lights were all green on your drive to work. The cop let you off with a warning. Whatever it may be, there are things in your life that are wonderful.
I would like to add that I am thankful for each and every one of you who may be reading this right now. I hope in some small way I have helped you to look at your life with a different perspective, and see the great things in it!
As always, be assertive. You are your own best advocate.
Until next time,
Lina
When I was first diagnosed, I knew absolutely nothing about MPNs. And for a while…I was totally fine with that. But after a few months of not knowing what was going on with me, or my treatment, I decided to do some research. Some of what I learned was reassuring, and comforting. Some of it much less so. (I should add that the majority of my research was done on the internet because, honestly…where else does a freshman in college do research…) The internet is a wonderful place to find information; but I advise using large amounts of caution – the internet can also be a scary place.
One of the first things I saw when I started researching was that the disease could…change…and become something more serious. Like Myelofibrosis, or Acute Myeloid Leukemia (AML). This terrified me. I didn’t really have hard evidence to tell me that I would progress to MF, or AML…but it was in the back of my mind that it was a definite thing. While the likelihood of it actually happening is pretty low, it is difficult not to focus on. Toward the beginning of my diagnosis I was always paranoid or thinking the worst, and I had to force myself to stop jumping to those conclusions.
While at the Chicagoland support group, one of the questions I asked Dr. Stein was about disease progression. How likely is it really? He said that the risk of progression to MF from ET goes up to about 10% after 15 years, and for PV patients it was about 15% after 10 years. I felt a lot better after hearing him say that.
Even though 10% is pretty low, I was still curious about symptoms of disease progression, so I asked Dr. Ruben Mesa, of the Mayo Clinic in Scottsdale for some information. He very kindly agreed to help me. The following information is paraphrased from an e-mail I received from Dr. Mesa.
For patients with advanced MPNs, there tend to be many difficulties and symptoms which indicate progression. For example, a drop in blood counts; either bringing blood counts to relatively normal levels where before they required intervention thru phlebotomy or drugs, or bringing them so low they require transfusion. An enlargement of the spleen is often seen, which causes pain and discomfort. The bone marrow also becomes scarred.
There is still no definitive reason behind progression in MPNs. It is thought that JAK2 inhibitors might help to delay disease progression, and also that drugs like Interferon has been shown to help to delay it. Aside from that though, there is not a clear reason/form of prevention.
Another way patients progress is typically from MF to Acute Myeloid Leukemia. (it is less likely, but it is also theoretically possible to see progression from ET or PV to AML).
As a patient I still fear that progression from ET to MF one day, or even possibly AML…but I try really hard not to let it nag at me. When something strange happens (A new or different symptom, for example) I do wonder…but I don’t automatically assume the worst anymore the way I used to.
I know I’m repeating myself when I say this; but I strongly recommend being an informed patient, and a partner in your own health care. Things are much less frightening when you know what they mean, and it is much easier to take care of yourself when you know what is going on.
You are your own best advocate. If you do not take care of yourself, who will?
Until next time,
Lina
Hello ladies and gents. You may have noticed that I didn’t post last weekend…I apologize for that. I was not feeling very well at all, and just didn’t have the energy to get off my rear and get to my computer to type anything. This was a treatment weekend and as usual, I’m feeling pretty crummy…but I’m only a day late on posting, so I’m going to call that a win!
I’d like to talk a little bit about something I had intended to address during blood cancer awareness month, but didn’t get to…due to my slacking off toward the end of the month. But anywho…here goes.
I know I talk a lot about being assertive about your healthcare, and I also realize that this is not easy for everyone. Doctors are our caregivers, and are trusted to have our best interests at heart. Now don’t get me wrong I have the utmost respect for doctors, and I realize that doctors went to school for many many years, and learned, and trained, and tested to study/translate data and treat diseases. Sometimes it seems that it can be difficult for doctors to see past that data and to the person that they are treating. This is why it is so important to be a partner in your health care; to be involved and informed about yourself, your progress, and the data that your doctor is watching so closely. This makes it easier as a patient to know when something isn’t right. When something isn’t right, even when the data doesn’t show that, it is important for a patient to be willing to inform the doctor/health team about it. I personally feel that if you don’t feel that you’re being heard, then you need to keep trying. You are the one feeling the way you do. You have the aches, the pains, the general feeling of something just not being right. No one else is going to feel it for you. If you feel that something is wrong, it is up to you to make it known to the people in charge of your health care.
As I have said many times before, you are your own best advocate. If you don’t take care of yourself, and stand up for what you feel you need, who will?
That is the end of my lecture now 🙂 I hope you are all having a good weekend, and are all feeling well!
Until next Saturday,
Lina
First, I would like to apologize. I failed at my goal of daily blogging. I am very disappointed in myself 😦 Not that this is an excuse, but I was traveling, and also feeling pretty sick. M and I were visiting family and friends out of town just over a week. (LOTS of driving, but REALLY worth the trip!)
Second, I would just like to say that I will try over the next couple of weeks to redeem myself! Also, I will be posting weekly from now on. My goal will be to post every Saturday. Subjects will vary, but will almost certainly be MPN focused 🙂
Third: Does anyone have any suggestions for posts coming up, or critiques of my posts from Blood Cancer Awareness Month? (other than the fact that I failed at posting every day…)
Let me know if there’s anything you would like to see here!
Until Saturday,
Lina
This will be brief, unfortunately so will the next several posts as I will be traveling…
Polycythemia vera
Essential thrombocytosis
Primary myelofibrosis
Chronic myelogenous leukemia (CML)
Source: Myeloproliferative disorders | University of Maryland Medical Center http://umm.edu/health/medical/altmed/condition/myeloproliferative-disorders#ixzz2fxGrPbxg
University of Maryland Medical Center
Follow us: @UMMC on Twitter | MedCenter on Facebook
Until tomorrow,
Lina
This is a re-post, but it is very important to me. This is an issue people with chronic illnesses run into fairly frequently.
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.
Until tomorrow,
Lina
When faced the diagnosis of a rare disease, one of the first things that needs to be done is finding a doctor who can treat it. That’s a lie. The first thing you do is pick your jaw up off the floor, and start breathing again, THEN you try to find a doctor.
My GP had a recommendation for me for a specialist, which was a good thing, because I had absolutely no idea where to go. Unfortunately this doctor had never seen an MPN patient, and had never even heard of an MPN patient my age. At the same time that I was diagnosed, my mother was also undergoing cancer treatment, and she asked her doctor if they had any recommendations. Her doc suggested I see someone at the same facility. The doctor I went to see (my current doc) does not specialize in MPNs, however he sees many of them in his practice. Sometimes you need another opinion, and you may not know where to start. I would suggest visiting http://www.mpnresearchfoundation.org/Find-Treatment-Facility to look for a treatment facility, and doctor near you!
Tomorrow we’ll be talking about the dreaded “You don’t LOOK sick…” subject…
Until tomorrow,
Lina
The Life of a Vaguely Neurotic MPN Patient 