Sharing My Patient Journey

When I was first asked to share my patient journey at the Diabetes Sisters Weekend for Women in Alexandria, Virginia I thought one thing: Why me? After all, I talk about my personal recovery from blood clots, and I don’t have diabetes. Excited as I was to explore the possibility, I returned the call to decline and said, “I think you have me confused with someone else. I don’t have diabetes.”

“No, we don’t,” was the answer I received, “We want you to speak because you do not have diabetes. We want to share a different perspective on the patient journey.” Excited by the possibility to speak to a different audience than the ones I am used to, I dove into preparing my presentation to talk about my personal journey from being a patient to being a patient advocate. I’ll be the first to admit, attending an event specific to a disease separate from the one I have was intimidating at first.

Before I went, I learned what I could about DiabetesSisters, a nonprofit organization whose mission is to improve the health and quality of life of women with diabetes, and advocate on their behalf. What I soon realized is, this resource – including the support and educational conference I would be attending – is the type of resource that the VTE community doesn’t have right now. We’re getting there, but we still have some progress to make.

Part of the support that DiabetesSisters offers is regular meetings, or in-person opportunities, to share information, experience, and support with people who have been there too. The Weekend for Women even offered support for partners of women with diabetes (Partner’s Perspective Program) and the Diabetes UnConference, which was exclusively to discuss deeply personal and sensitive issues such as the fear of the unknown when managing a lifelong illness. I soon realized how incredibly fortunate the people attending these sessions are to have this measure of support in their lives, and I immediately wanted to be a part of it.

At the conference, I shared my personal thoughts about how to navigate the path from patient to patient advocate through storytelling, and I shared my thoughts about how telling our stories can in fact lead to healing and empowerment. I also took some time to share important facts about blood clots, including risk factors, and signs and symptoms. I had several women come up to me after my talk to either share their personal blood clot story, or the story of a family member. I also had a few people tell me they had no idea they could be at risk for a blood clot, and about how they planned to discuss their risk with their doctors upon their return home.

I was invited to sit in on the workshops, in which I observed some thought-provoking discussions about how to support a spouse or loved on who has diabetes, and how to handle our worst fears when facing a chronic or long-term illness, like the fear of being incapacitated and left alone, or even the fear of death. I realized these are all thoughts I have had throughout my recovery from blood clots, and I still have some of them today. The fear of the unknown is a great obstacle for many of us, and it was encouraging to hear other people talking about it, face-to-face.

By now, you might be thinking, “Great, but I’m not diabetic, I have a blood clot, so why are you sharing this information with me? The answer is: Whether you have diabetes, have a blood clot, or have a clotting condition, we all share the same journey as a patient. We all must live day to day with an illness that might never go away. We have the same fears, the same struggles, and the same concerns. A person with diabetes might have to consider what he or she eats, and check his or her blood sugar. I have to consider what I eat and check my INR because I take warfarin. We both have to remember to take pills, go to regular follow-up appointments, be proactive in our health, and sometimes, we even have to miss out on things because our illness might take precedence over what we want to do.

What these people taught me is, no matter what the condition is, we all face the same fears, struggles, setbacks, triumphs and joys as a patient, and as a person. They taught me what I was supposed to be sharing with them: Sometimes it is easy to become fully consumed by our own disease and our own situation, but in fact, there are people all around us who can relate to what we have gone through, or what we are going through. As a blogger, and as a patient advocate for the VTE community, I become very consumed with that, because it is my passion, but it’s important to remember that I truly am not alone, even when I look outside of this community.

Below are some some resources that I want you to have. If you have diabetes, or if you want to begin your journey from patient to patient advocate, explore the links below for some essential tools.

Extra Diabetes Resources for You:

Did you know? Long-term diseases like diabetes are a risk factor for life-threatening blood clots. If you have diabetes, I would love to connect you with some of the resources and bloggers from the DiabetesSisters Weekend for Women.

Blood Sugar Trampoline
Below Seven
Diabetes Mine
Yoga for Diabetes

Patient Advocacy Resources for You:

Did you know? Anyone can become a patient advocate just by sharing their story. Below are some resources to help you get started.

Charting Your Own Patient Journey (my slideshow from the conference)
How to Raise Blood Clot Awareness: Discover Your Personal Plan
Sharing Success as an Online Health Blogger
From Make-A-Wish Employee to Making One of My Own Wishes Come True

There is hope for healing and you are not alone,



Reader Writes In: Are you dealing with other health conditions besides blood clots? Where are you on your own patient journey? Where would you like your journey to take you?

Are you new here? Welcome to BCRN. Here is my story and more about me.

Are you worried that you might have a blood clot? Here is how to talk to your doctor.

Connect with BCRN on Facebook and in our private Group.

Facebook is killing us

facebook is killing us

Facebook is killing us. What was originally created to be a convenient method for people to stay in touch with family and friends [without actually having to talk to them] has, in many respects, taken a drastic turn for concern and is actually becoming a detriment to our society.  Not only is it troubling that younger generations in particular may develop a misleading perception of what real human communication is, but our physical health is sure to be scathed by long hours spent in front of the computer (or TV or game console) without any pause for exercise or relief. Our minds are pushed to the limit, bombarded by distraction after distraction and even when we are sleeping, we often find it difficult to rest.  In the United States alone, obesity and diabetes – and deaths as a result of heart attack and stroke – are on the rise now more than ever and I believe it is in part due to our inactive lifestyle and inability to unplug. We won’t do it, we can’t do it. We are addicted to the constant flood of information inundating our news feed by the second.

logout of fb

But, even more than all of these things, Facebook in particular is dangerous to our health because we do use it as a primary source of communication. And like the all-knowing, all-seeing, all-believing Google, we usually turn to the internet for help before anywhere else. You know what I am talking about – how many times have you turned to Facebook for a cure to the common cold, advice on how to treat a sprained ankle or thoughts as to what ailment may be plaguing you? I see it all the time and I am guilty of it myself. So many times I see someone posting a question on Facebook – that I then find myself answering – when I am really thinking, “You probably need to see a doctor.”

So, why don’t we [see a doctor]? Facebook is free, it’s quick and it’s the surest way to get attention when you’re feeling bad and need it the most, right? There has come a time when we all need a little encouragement from a friend or family member saying, “Hang in there, that happened to me and I’m fine” or “I’m so sorry you’re feeling that way.” (Remember, we can’t pick up the phone and call)

What I find disturbing is when Facebook and the vast array of online resources becomes our only means of communication with the outside world. When we base our health on what Facebook says when we should be calling 9-1-1 is not okay, for anyone and it is in fact, why Facebook is killing us. For example, I am a member of many online support groups (and there is nothing wrong with a good support group by any means) and it is bewildering to me that so many people who have previously experienced a DVT or PE turn to the support groups for answers before contacting their doctors. This is compounded by the frequent posts beginning with things like “I NEED HELP, SOMETHING IS WRONG” and the person goes on to describe swelling, tenderness and trouble standing or walking on their legs. To my knowledge, Facebook cannot yet dial 9-1-1. When faced with a PE, death can occur within moments of symptoms and there is no time to waste on Facebook.

facebook dislike

It bothers me particularly in regards to these groups because I feel like one should know better. There, I said it. When I experienced my DVT and PE, I had no idea what was happening to me. I did not know the signs and symptoms of blood clots and I didn’t check Facebook to see if I should be concerned – I just wasn’t. I called my Dad who called the doctor who called me and ordered me to the ER – almost too late by my own accord, I might add (even without the help of Facebook).

My point in writing this is that if you are experiencing signs or symptoms of a DVT or PE, or even if you just don’t feel good, please contact your doctor before anything else like consulting Facebook. And if your doctor can’t see you, please don’t hesitate to go to the ER or Urgent Care. We have all been given a second chance at life and it concerns me that so many of us continue to play with fire. I know no one wants to go back to the hospital – myself included – but if I ever experience something like I did the night of my PE, you will find me there in a heartbeat, full knowing that it could be my last.

All of this said I do think it is also helpful to be a part of online support groups and there is nothing wrong with going in and posting your experiences or asking questions after the crisis is over. I don’t even think I am opposed to a back-of-the-ambulance post (which, yes, I have seen) as long as you are taking care of yourself first and foremost. But, please, don’t wait to get to the doctor.

I have found some wonderfully supportive, intelligent, helpful, encouraging support groups through Facebook (which you can see HERE) – just don’t let me find you there when your life may very well depend on it.



Share your story. Do you or have you turned to Facebook for help before calling your doctor? Does it concern you when others do so or do you notice? Do you think Facebook is killing us?

There is hope for healing and you are not alone,