Living Well with MPNs Review/Recap plus a personal revelation

Hello there, dear readers. I hope you are all having a wonderful week šŸ™‚ The weather here is unseasonably cool, so I’m taking full advantage of it, and writing outside with my wonderful writing buddy, Tesla! (This note is from when I started this blog last weekend lol)

I’d like to start this entry by talking about last weekend. M and I had a fantastic time in Chicago. I was so thrilled that he was able to come with me to the Living well with MPNs meeting!! Firstly I’d like to thank the MPN Research Foundation, andĀ Patient PowerĀ for putting on this wonderful event! I was so very grateful to be able to join everyone there. One thing I was surprised by was that it was completely free! The day started at 9:45, they offered breakfast, there were several groups set up with tables, and information. I am going to say right now, that unfortunately my day began with a pretty terrible migraine. My husband and I walked from our hotel to Northwestern’s campus, and just as we arrived in the lobby and got situated, it began. The aura and the pain were terrible for about the first 2 hours of the day, so I was unable to interact with the groups out in the lobby šŸ˜¦ Hopefully someone who may have been there will have gotten information from the groups that they would be willing to share with me!

As we were called in to the auditorium, everyone seemed a little bit nervous. Kind of like walking into a lecture hall for the first time in college…people mostly kept to themselves at first, and weren’t really interacting just yet. But then as the speaker, Jeff FolloderĀ began to ask questions, and we all started to notice one another nodding along with the responses, and we (at least I) realized that these people were all just like me…we (I) began to warm up a bit šŸ™‚ (I’m referring back to my notes just now, but I’m sure I’m going to miss a few things…I’ll link to the videos on Patient Power’s website as soon as they are posted though šŸ™‚ )

One of the questions that seemed to be a hotly contested issue was the question of age as it relates to the treatment of patients. It would seem that the general consensus USED to be that, for some reason as soon as a patient turned 60, they became significantly higher risk. The implication from the experts (Dr. Brady Stein, and Dr. Alison Moliterno) is that age does not really correlate with ones risk as strongly as the medical community used to think. It is more an issue of whether you have a history of thrombotic events, or heart disease, or other issues that may not mix terribly well with an increased risk of clotting. You could be 79 and have the blood vessels of a teenager, or be in your 30s with the circulatory system of a 90 year old. It really varies by patient.

What made me happiest was how many times I heard the doctors talk about advocating for yourself, and being assertive. I was so, so happy to hear it. It is so very true, and I feel so strongly about it.

The Patient Power event was extremely educational, and I am so thankful that I was able to go.

Personal Revelation:

One of the things that was spoken about a lot was the “itching” and “burning” symptoms in PV/ET patients. I’ve never really thought about it before…but apparently not everyone actually experiencing burning/tingling/itching in their extremities when they take a hot bath/shower. I never really considered it a symptom. For 9 years I completely ignored one of the most complained about symptoms in the MPN world (other than fatigue, that is…). I cannot begin to tell you how dumb I felt when I realized that. lol. It just never occurred to me that it was a symptom of my disease.


 

I’ve got a lot more to say on the subject, but I’m going to head off to continue to prepare for this Saturday in San Antonio! Are any of you going? Do you know anyone that’s going? Please share this with anyone you think might be going! I hope to see you all there! Wish me luck, please šŸ™‚

As always, you are your own best advocate. if you do not take care of yourself, who will?

Thank you!

Until next time,

Lina

Exciting News :) #linasgotnews

I promise to give a review of the Living Well with MPNs meeting…just not in this entry. Unfortunately the laptop I started writing that article on is out of commission at the moment. As soon as it is back up and running, I’ll post that one…for now though…On to The News I tweeted about the other day!!!


Part One

I have been asked by the MPN Research Foundation to attend and present atĀ a meeting in San Antonio, Tx!Ā Ā The meeting is put on by Nord (the National Organization for Rare Diseases), and is for patients and medical professionals.Ā I will be speaking about the need for funding for research, and hopefully be able to share my story with other patients, network, and make some new friends! Are any of you going to be in San Antonio, Tx for the meeting next weekend? It’s Saturday, June 28th, and it’s free! Click on this link for more information, and to register!

Part Two

In addition to the NORD meeting next weekend, I have also beenĀ offered the opportunity to attend Lobby Days in Washington DC with the wonderful people from the MPN Research Foundation, and the OVAC (One Voice Against Cancer). The event will be July 7th and 8th. At this event I will be speaking about the need for federal funding for cancer research, my personal experiences with my cancer. From my understanding, the attendees will be in small groups with other patients, and speaking with congressional aids. The event will take place over 2 days, and from what I’ve seen of the itinerary, it will be a pretty busy couple of days!


Those of you who know me personally are probably aware that I have always been terrified of public speaking. However, as nervous as I may be, I can not even begin to express how very excited, thrilled, andĀ gratefulĀ I amĀ to have been asked to attend these events. I would like to take this opportunity to thank the MPN Research Foundation for their trust in me, I will do my very best to representĀ the group, and the subject matterĀ to the best of my ability!

My strongest passions in life are patient advocacy, and promoting the education of patients. I am so excited to have the chance to do just that over the next couple of weeks!

This time 3 years ago, I had attended oneĀ patient event, since the time of my diagnosis…this summer I’m attending 3 patient events in a month!

I apologize for the raving/rambling here…I am just so very excited about the upcoming events. I am hoping that some of you will be there! Please comment and let me know if you will be in attendace!

As always, you are your own best advocate. If you do not take care of yourself, who will?

Until next time,

Lina