Thankfulness…

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

 

The importance of being a partner in your own health care.

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

Blood Cancer Awareness Post 24: “But you don’t LOOK sick…”

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

Blood Cancer Awareness Post 14: Polycythemia Vera

Yesterday we started talking about MPNs, just a general overview. Today we will be talking about Polycthemia Vera, or PV. This is again a re-post from earlier.

What is PV?

You may remember in my last issue regarding MPNs as a whole, over the next few weeks I plan on breaking down each of the 3 main MPNs (PV, ET, and MF).

 I will start with Polycythemia Vera(we will be addressing Primary Polycythemia).

PolyCythemia Vera

Poly-Greek for many

Cythemia(Made up of 2 words) Kytos – Greek word meaning Cell and

Haima – Greek word meaning Blood.

Vera – From the word Verus, meaning true.

To sum that up: Many blood cells floating around in the blood stream.

PV affects all of the hematopoietic bone marrow elements, meaning all the blood cells produced in the marrow are increased. This can lead to a variety of different issues and symptoms including, but not limited to headaches, itching(unique to PV), dizziness, abdominal pain(due to enlarged spleen or possibly liver) increased risk of blood clots, and stroke.

As I said in the issue before, each of these MPNs can be very difficult to diagnose, as the symptoms can be difficult to pinpoint, and often lend themselves easily to a variety of diseases. I think I will go through and answer the same some of the same questions as in the first entry, applying them to PV.

How are you diagnosed with that disease/condition/thing?

How do they treat it?

When will it be cured?

As with most MPNs, PV can often be discovered after some other event/illness/diagnosis. Regardless of how the disease is initially discovered, there are several criteria that must be present to help verify which MPN you are dealing with. Most commonly diagnosis happens after a series of blood tests; Complete Blood Count (CBC), Comprehensive Metabolic Panel (CMP), and often Bone Marrow Biopsy (BMB). What the doctor is looking for in aCBCis an abnormal increase in blood cell amounts. Red cells, white cells, platelets, everything. With a BMB your doctor will be looking at bone marrow abnormalities and genetic markers in the marrow.

Treatment for PV varies by patient. Treatment ranges from watch and wait, or phlebotomy, to prescription medications like Hydroxyurea or Anagrelide(More common for ET patients, but  PV can take it as well). Phlebotomy is basically blood letting. When counts get too high, a patient will go to the clinic, and a unit or so of blood will be removed from their body, thus lowering blood counts.

As for a cure, this is the same as with any MPN. There is no “cure” per se. The disease can be managed thru treatment, and some can live a relatively normal life with little to no interference from the disease. However, since every patient is different, everyone will experience a different set of symptoms of the disease.

I do not claim to know all there is to know about ANY myeloproliferative neoplasm for that matter…. I am sure that I missed something here, but this is just my general understanding, and the way I would explain it to someone who knew nothing about PV. I would like to take this opportunity to invite PV patients to add to this. Particularly things like “What do you wish you had known at diagnosis that no one told you?”

Tomorrow we will be talking about Essential Thrombocytosis (ET)

Until tomorrow,

Lina