Thursday 3 March 2016

Pain News Network - Living with Chronic Blood Clots

Articles on Pain and Therapies

Living with Chronic Blood Clots


Martin Lemieux is from Ontario, Canada. Martin dedicates his time to helping patients who cannot advocate for themselves. He is currently writing two books on health care, patient care and how to be your own healthcare ambassador. Martin can be reached on Twitter at @Martin_Lemieux.

Posted: March 01, 2016
By Martin Lemieux, Guest Columnist

Article: PainNewsNetwork.org/stories/2016/2/29/my-life-with-blood-clots


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Monday 29 February 2016

#RareDiseaseDay - Patient Stories


#RareDiseaseDay - Patient Stories:


I've put together a small collection of Rare Disease stories on Storify. Please feel free to browse through real-life stories on people who suffer silently without a voice.

SEE THE ENTIRE STORY HERE » 



Some Example Stories:









SEE THE ENTIRE STORY HERE » 


Regards,
Martin Lemieux
@Martin_Lemieux - Tweet



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#RddChat - Rare Disease Day Chat


#RddChat - Rare Disease Day Chat:


Rare disease day comes once a year, but people with rare diseases live with their illnesses 24/7. Read stories from those people, resources to help, moments that are hard, and the faces of #RareDiseaseDay.

SEE THE RARE DISEASE DAY CHAT HERE »


Some Rare Disease Chat Members:








There's so MUCH more information, patient stories and resources one can browse through concerning our Rare Disease Day Chat. Please don't forget to retweet information that interests you.

SEE THE RARE DISEASE DAY CHAT HERE »


Regards,
Martin R. Lemieux

@Martin_Lemieux - Tweet

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#RareDiseaseDay - The Truth About Rare Diseases

My #RareDiseaseDay story is unique, strange and full of unanswered questions. But, so are other #RareDisease stories, they too revolved around unsolved #DX's (diagnosis) and worried family members.

The Truth is Ugly:


It's a sad reality, but the fact still remains - most #RareDisease sufferers are left feeling: alone, ashamed, darkened by their secrets, unwanted, unappreciated and mostly, they are left wondering if anyone out there will ever truly help them to dissect their unsolved mystery.

It's a known fact that there are over 7,000 rare diseases (source: globalgenes.org), which adds up to around 350,000,000 people worldwide. That's about 4.60% of the world's population (Estimated higher between: 6%-8%). Not a high percentage when you look at just the numbers, but think about this for a second, that means that there's a high probability that you yourself are guaranteed to know, or have known someone who suffers on a daily basis. Only about 400 rare diseases have therapies and about 80% have a genetic components.

What does it all mean?


Most people who suffer from #RareDiseases will be: shoved around, pulled, pushed, pressured, poked and driven away from the health practitioners they encounter. I'm not making this up and I'm definitely not exaggerating one bit. In my lifetime of being pushed from one specialist to another, one truth remains; rarely do I even encounter someone willing to risk their neck and test the limits of the #healthsystem in order to truly help me to get answers.

Don't get me wrong, I've seen many doctors who gave a "crap", but rarely do I find any willing to go beyond their mandate, beyond their field of expertise.

True Story:

One time, I was sitting in a room waiting for the doctor to come see me, and to my amazement, I could hear the very same doctor complaining to the nurse stating and I quote "What the hell does Martin think I can do for him? We need to send him to someone else, I don't want to see him". I cannot make this up if I tried, nor have I changed a single word this doctor said.

The unfortunate truth is that the doctor had no idea that my ears were really sensitive and I could hear every word. So I calmly stepped out into the hallway, looked him directly in the eye and replied: "Shame on you (doctor's name), next time act like a professional and give me sound alternatives you prick". Needless to say, the doctor was shocked as I gathered my things and quietly left the hospital.

The Ambassador in "YOU":


Those who suffer silently need to learn how to yell from the top of buildings. Quietly agreeing with every prognosis, every DX, every medication can hurt a person's chances of a normal, productive and happy life.

Due to cuts in funding, practice overhead, overcrowding ER's and other factors, many health care providers working in the system are overworked, under-appreciated and under-paid (in some cases). This and other variables makes it harder and harder for rare disease sufferers worldwide to get the quality care they pray for.

It's imperative for #RareDisease sufferers to better understand their own health issues. Learning everything you can about your own health care is essential to building a strong case for yourself. Logging and detailing every personal moment in or around the health industry is vital. Tracking your history is key to getting the right answers at the right time. Without that knowledge, each time you tell your story, each time you're asked to repeat the basics, the professional hearing that information can only look at you with blinders on. It's a sad reality, but you can't blame the professional. They only know what they know.

Logging Your Health Care:


Here are some basics to document each time you see a specialist.


  • Time/Date
  • Doctor(s) Name(s)
  • Doctor(s) Profession
  • Who referred you?
  • The reason for your visit?
  • What questions did you ask?
  • What were those answers?
  • What DX did you receive?
  • What possible recommendations should you consider?
  • Did you get any tests done?
  • Did you give blood? For what results?
  • Did you do an X-ray? For what part of the body?
  • Did you get an ultrasound? What were the results?

And so on... As you can see, there's so much information you can obtain from each visit. For every logged visit, a history starts to develop, and small signs start to reveal themselves. Months, even years later - all the data you meticulously collected will start to benefit the next doctor you see, and the next, and the next. Doctors are no more than highly specialized detectives and they are very good at what they do.

Don't expect the same treatment from an ER doctor. If your rare disease flares up, or new signs emerge and you're forced to visit the ER to get checked out, don't expect a miracle from that visit. ER"s are designed to help your immediate needs, not necessarily long term commitments. Don't get discouraged from this. Take each visit as a learning experience, log everything.


How to Find a Cure to my Rare Diseases?


This is the Holy Grail to the health industry. Billions upon billions of dollars are spent on research each year trying to help cure known illnesses, while also finding the unknown at the same time. Not many illnesses in recent history have received the honor of having a cure, but it doesn't mean you should give up. New developments are being discovered every day, new advancements in medications, and because of the internet, patients globally are coming together sharing ideas on a grand scale. Doctors are increasingly facing the reality of seeing highly educated patients, some good and some bad.

If you want to help your cause, write down your story, do your own research. When you've done your research, find other sources to research some more. Get involved with local groups that relate to your #ChronicIllness. Talk to as many health practitioners as you can. Conventional medicines aren't the only source for help! Meditation, aromatherapy, yoga, time-tested traditions are starting to come back into mainstream wellness and it's about time. Don't disregard ANY tip that can help to enhance your wellbeing.

The moral is, become your own health ambassador, become the professional at "YOU". In the end, the more you learn, the more you research, and the more you participate, all the efforts you do will guide you to bring you one step closer to finding the answers you're looking for.

PLEASE HELP RARE DISEASE DAY - SHARE THIS ARTICLE WITH OTHERS!

Regards,
Martin R. Lemieux

@Martin_Lemieux - Twitter
@MartinLemieux - Mayo Clinic Connect Member

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Friday 19 February 2016

Rare Disease Day Chat - #rddchat


 
 
 
 
 
 
 
 
 
 
 
 
 

JOIN US: RARE DISEASE DAY CHAT: 


Date / Time: February 22nd, 2016 @ 4:00pm EST
Twitter Chat: #RDDCHAT
Join Here: Rare Disease Day Chat

Share your story with others on this special occasion Twitter chat. Discuss real stories with others like yourself. Hear ideas from professionals alike.


FOR THE PATIENT:


T1: How have you been affected, or someone you love been affected by a Rare Disease?
T2: What has been your best source for support dealing with a Rare Disease?
T3: What has been your hardest pitfall to overcome with your Rare Disease?
T4: Who in your life has been the most inspirational person suffering from a Rare Disease?

FOR THE HEALTH PRACTITIONER:


T1b: How have you been affected as a professional by Rare Disease patient?
T2b: What resource(s) would you recommend for those with Rare Diseases?
T3b: What is the hardest pitfall you feel Rare Disease patients go through?
T4b: Please share a story of someone you know suffering with a Rare Disease?


LEARN ABOUT MY RARE DISEASE STORY HERE »
(Factor V Leiden | Livedoid Vasculopathy | Chronic Ulcers)

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Tuesday 16 February 2016

Rare Disease Chat - #rddchat - Feb 22 - 4pm


Twitter Chat - #rddchat - Feb 22nd @ 4pm est

Join people everywhere for this special occasion to support those who suffer from #rarediseases .

Twitter Hashtag: #rrdchat
Twitter Chat: #rddchat

FOR THE PATIENT:

 T1: How have you been affected, or someone you love been affected by a Rare Disease?
T2: What has been your best source for support dealing with a Rare Disease?
T3: What has been your hardest pitfall to overcome with your Rare Disease?
T4: Who in your life has been the most inspirational person suffering from a Rare Disease?

 FOR THE HEALTH PRACTITIONER:

 T1b: How have you been affected as a professional by Rare Disease patient?
T2b: What resource(s) would you recommend for those with Rare Diseases?
T3b: What is the hardest pitfall you feel Rare Disease patients go through?
T4b: Please share a story of someone you know suffering with a Rare Disease?

LEARN HOW TO PARTICIPATE (Tutorial) »


My Rare Disease Story:

My story starts back when I was around 18 years old, almost 20 years ago.

At the age of 18, I had my first DVT, deep vein thrombosis (blood clot) in my lower left leg. Doctors not thinking anything of it thought it was due to a back sprain that forced me to lay down for a long period. But once I started getting a clot about once a year thereafter, they started investigating further. Around when I was 21 I was diagnosed with Factor V Leiden - blood clotting disorder, prone to clotting for the rest of my life.

At this age, it was a scary thought, I knew people died from clots every single day. I later learned that clots are the 3rd leading killers globally. My mom was especially afraid for my well being and would constantly want me to be careful, but being extra careful all the time isn't living, it's like being in prison for the mind.

About 9 years ago, around 2006-2007 I was working one day and I had this reddish/black round spot over top of my outer ankle on my left leg. After a physical days' work, I came home, took off my work boots and this spot ripped off with my sock causing a great deal of pain, along with bleeding. Panicking, I went straight to the hospital. Once they were done with some extensive tests, no one had answers. I was given outpatient care for wound care and went on for a while.

The wound itself became larger, more inflamed and caused a great deal of pain. I was seen by a dermatologist who at the time was out of options for me, so I was sent to a leading dermatologist in Canada, He determined that these chronic wounds could be due to a condition called Rheumatoid Vasculitis, which after years of being on Prednisone proved to be false. Not knowing for sure what is wrong with you is the hardest life event someone has to go through, especially when answers are swirled around you for years. My family took it the hardest since all they wanted for me was some answers. Answers that might one day lead to helping to heal my wounds.

Any form of Vasculitis is rare, I was initially treated with Prednisone for almost two years with no effect. In the end, I didn't want to be on Prednisone anymore because of the major side-effects and the fact that my wounds were not healing what so ever. My specialists agreed, which brought the question, if it's not Vasculitis, it's possible that it's in fact an even more rare condition called: Livedoid Vasculopathy. There's very little documentation on this condition and even less on ways to treat LV. I've tried many treatments, including daily injections of Low-Molecular Weight Heparin and even a 6-week treatment using Hyperbaric Oxygen Tank therapy 2-hours a day to induce oxygen where it counts most. Unfortunately due to my underlining conditions (i.e. Factor V & LV), any treatment we've tried has had little to no effect.

Both my legs have been wrapped with Coban2 - 2 Layer Compression Bandages, Biatin IBU wound dressings and other dressing materials for almost 9 years straight. I've unfortunately become somewhat of a professional wound care specialist and try to educate and help others whenever I can. I've been to many wound care clinics giving presentations to new ER nurses and long-term wound care clients looking to be more independence with their own care from home.

One day at a mall, I was standing in line to get a coffee when all of a sudden, I felt a "pop" from my right leg. A few seconds later, my foot felt extremely warm. Looking down at my leg, I was shocked to see that my foot was now standing in a pool of blood. Stunned, confused and somewhat embarrassed, I started walking down the hall to try to reach an exit in order to hail a cab to go to the hospital. I had no idea I was leaving a trail of blood as I walked, and a few pedestrians followed my every step. I eventually collapsed from the blood loss and woke up with sitting on the floor to a kind man who had wrapped his shirt around my leg to prevent more blood loss.

This was probably one of the scariest moments in my life. I was surrounded by people who were helping me while I was sitting in a pool of blood and I didn't know a single person (still don't to this day). It amazes me when people say "the world is a mean place", well I've found that there are kind individuals everywhere I look. It's all in the mentality on how you chose to live which surrounds you with what you believe in.

To date, these conditions have changed my life drastically in ways most people can't fathom. We’ve also discovered after extensive tests that I was born with one kidney, my arterial system is extremely abnormal and I have an elongated bladder. Like most people suffering from these conditions, I am forced to take an assortment of medications to help with: blood clots, inflammation and pain. I have to be very careful of the type of foods I eat to enhance energy, healing and well being. My life has become very specific to daily tasks and necessary precautions.

One day I hope to meet a specialist willing to take a little risk here and there. At this point, I'm open to any suggestions that can provide me with some form of possibility for a better life.

Nowadays my time is dedicated to helping others, gaining knowledge and connecting with like-minded individuals who are an inspiration to myself and to all who know them.

Regards,
Martin R. Lemieux

@Martin_Lemieux - Tweet
@mlemieux - Mayo Clinic Connect - Founding Mentor


Twitter Chat - #rddchat - Feb 22nd @ 4pm est

Join people everywhere for this special occasion to support those who suffer from #rarediseases .

Twitter Hashtag: #rrdchat
Twitter Chat: #rddchat

T1: How have you been affected, or someone you love been affected by a Rare Disease?
T2: What has been your best source for support dealing with a Rare Disease?
T3: What has been your hardest pitfall to overcome with your Rare Disease?
T4: Who in your life has been the most inspirational person suffering from a Rare Disease?




Posted by at 1 comment:

Share My Story - Patient Care Connect

Patient stories have a big impact online. I try to share my story so that other like-minded individuals, or people who go through similar health care woes, can connect together to help get the answers and motivators that they may need.

If you wish to share my story, please contact me via Twitter here. Send me a private message and I will be happy to work with you in order to provide you, or your organization with a uniquely written story.

My Story ~ Published Online:


A PATIENT'S PERSPECTIVE & LIFE SAVING STRATEGIES ON CLOT PREVENTION
Source:  Intake.me


LIVING WITH CHRONIC BLOOD CLOTS
Source:  PainNewsNetwork.org


FATHER TRYING TO ADVOCATE FOR PEOPLE SUFFERING WITH CHRONIC ILLNESSES. 
Source: RareDiseaseDay.org


 MARTIN'S STORY – YOU MUST BE YOUR OWN AMBASSADOR
 Source: VasculitisFoundation.org


More to come shortly!

Regards,
@Martin_Lemieux


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