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Please Help Us, Help Others!!!!

Beunintimidated — Tue, 24 Jan 2023 20:26:34 +0000

If people don’t know who we are or how to find us, we won’t be able to help them. Take a listen; a quick 15 minutes could save someone’s life and that someone could be a loved one of yours!

AWARENESS SAVES LIVES!!! Keep talking, keep sharing…

Beunintimidated — Tue, 18 Jan 2022 15:39:23 +0000

https://www.beunintimidated.org/wp-content/uploads/2022/01/Be-UninTIMidated.mp3

The Wesley Family knows that awareness may possibly save your life – at the least, it will provide you with HOPE! Take a listen and then share this with everyone you know. Together, we can, will and are… making a difference.

Awareness of this cancer and the treatment(s) available are key to saving your life or extending it. The Wesley Family and BE uninTIMidated continue to work tirelessly to help others. Please help us.

BE uninTIMidated Casino Night Sponsors

Beunintimidated — Wed, 13 Dec 2017 23:07:33 +0000

Huge thank you to all our sponsors for the 5th Annual BE uninTIMidated Casino Night!

Click on a sponsor to view their webpage.

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Other sponsors

Black Button Distilling

Forest Hill Restaurant & Catering

Iron Tug Brewing

Manning & Napier

Anne & Mike Dupin

Sheriff Patrick M. O’Flynn

Rare Disease Day – 2016

Beunintimidated — Mon, 29 Feb 2016 17:13:40 +0000

February 29, 2016 marks the 9th annual international Rare Disease Day. On this day every year, organizations around the globe unite their efforts to help bring awareness to the many rare illnesses that do not often see the spotlight. The international rare disease community asks that you recognize this day and Join us in making the voice of rare diseases heard.

The collective organizations releasing this statement wish to bring awareness to pseudomyxoma peritonei, also known simply as PMP, and cancer of the appendix (which often causes PMP). This rare disease impacts approximately two in a million people every year. As patients, caregivers and clinicians impacted by this disease, it is our hope to bring awareness to this disease and its proper treatment.

Twenty years ago, PMP was almost uniformly fatal. Today, treatment exists that is potentially curative and is practiced by centers of excellence around the globe. Even though a treatment exists that cures many, it is not broadly practiced and local physicians and their patients routinely proceed through ill-advised and insufficient treatments for lack of knowledge.

The standard of care for PMP is cytoreductive surgery plus hyperthermic intraperitoneal chemotherapy (CRS+HIPEC). This procedure, at times coupled with intravenous chemotherapy, has been successful at curing many patients. It’s important to understand that the skill and experience of both the surgeon and the treatment center are important factors that influence a successful outcome. Although the procedure is quite invasive, when performed by a specialist the associated morbidity and mortality are no greater than for similar surgeries.

CRS+HIPEC has been shown to provide long term survival in up to 90% of patients with low-grade PMP pathology who are properly diagnosed and undergo the treatment early enough in the disease process. Additionally, it has demonstrated an overall 10-year survival in nearly 2/3 of patients diagnosed with this disease.

A number of patient-run organizations work together to raise awareness about PMP and its proper treatment, raise funds for research and disburse them responsibly, and to provide information, support and hope to patients, caregivers and the clinicians that fight this disease. We do so with a positive attitude while being realistic about the challenges around its treatment. In this manner we support our small community and help ensure all patients have access to the standard of care for our rare disease.
We hope you’ll join us on Rare Disease Day in raising awareness of pseudomyxoma peritonei and appendix cancer. Please share this message and join us in making the voice of rare diseases heard.

Appendix Cancer Connection (Appendix-Cancer.com)
BE uninTIMidated (BEuninTIMidated.org)
The Insurance Warrior (TheInsuranceWarrior.com)
PMP Research Foundation (PMPCure.org)
PMP Pals Network (PMPPals.net)

What do I do now? What should I do first? What to do when you’ve been given a concerning health diagnosis.

Beunintimidated — Wed, 26 Mar 2014 14:53:06 +0000

People find themselves in such a tailspin once given medical news that is, or can be, of concern… and rightly so. You have no idea what to do first. Generally what we’ve seen, as well as what we did ourselves; you listen to the Doctors and go home to try to digest what you were told. So once you’re home and you begin to go through all of the emotions – in between the tears and the worry – you feel like there is something you should be doing. Maybe you don’t, maybe you (feel what I spoke of in my last entry and) trust what you’ve been told. Either way, here is my suggestion to anyone that receives a medical diagnosis of any sort:

Before you leave the hospital, it is critical that you understand your rights to your Medical Information. You should ask for an Authorization for Release of Medical Information. You need to complete that form immediately and when it asks you for the “Type of Records or Information Requested” complete the paperwork with all tests, reports, records and scans related to your situation. Complete the paperwork with ALL dates related to your situation. Walk the completed form to the Records Department before you leave the hospital. Turn it in and ask for copies to be ready within 48 hours. Ask for 3 copies of everything. Be sure you are getting copies of the disks of your scans and not just the Radiologist’s Report. GET 3 COPIES. You have the right to as many copies as you want (fees may apply).

Once you have done this and have this information in your hands, you will feel more in control. You will be on your way to owning your treatment, your health, your future. You will keep 1 copy of this information with you at all times. You will have it with you at every appointment you go to. Get a binder, get organized. The other copies will be used to send to the Specialists or other Medical Centers for 2^nd and 3^rd opinions. Remember, you will challenge your Doctor, you will seek clarity, you will ask for the statistics to validate what you are being told and you will double and possibly triple check the accuracy of it. You will own your situation.

Get copies of everything as quickly as you are told of your situation; this is “what you do first”.

From Heartbreak to Hope; challenging your Doctor and owning your future

Beunintimidated — Wed, 19 Mar 2014 14:49:50 +0000

I have been giving a lot of thought lately to what responsibilities Doctors should have. Is there any rhyme or reason to what and how they advise a patient when it is a matter unfamiliar to them? I am aware of some Doctors that have advised a patient that the “rare cancer” they’re seeing is out of there area of expertise and recommended finding a Specialist. Then there are some Doctors that say, this is a rare, yet don’t provide the insight that maybe they aren’t the best person to be treating the disease at hand. Just maybe there is someone else out there that has seen this before or treated it with success. When does it become their responsibility to admit that maybe, just maybe, they should not throw just anything at it?
So, how do I get the word out to people that you need to question everything when your health is at stake? That’s why I’ve created this entry, hoping it will make its way around and eventually help at least one person.
You shouldn’t be worried about hurting anyone’s feelings. You should not be intimidated by the Doctor in the white coat, the Radiologist who reads your scan nor the very accommodating, emphatic Nursing Team… you need to take responsibility to question everything. Why are you recommending this regimen or this course of treatment? How many times have you treated this specific disease/situation with this regimen and what has been the outcome? How many cases like “this” have you seen and treated? Of those that you have treated, what is your success rate? What has been the outcome of those patients? Do you have some like patients that I could speak with?
All of these questions are so critical. Don’t just let a Doctor tell you what to do, ask to understand why they are recommending what they are. They are just Doctors, they put their pants on just like we do and guess what? Doctors don’t know everything about everything. Do you know everything about everything in the Industry you are in? I’m guessing you don’t. Think about it this way; if your house needs a new roof are you #1 going to call a General Contractor to take care of that for you or are you going to call a Roofing Company? I’m betting you’ll call a specialist in the area of Roofing. This is why people have areas of expertise. If you have a skin issue you seek a Dermatologist, a foot issue you’ll see a Podiatrist, ears or nose issues an ENT – you get where I’m going with this.
So if this all makes sense to you, then why are we afraid to ask questions of the Doctors? Why are we just okay with the Doctor we get “assigned” to when in need? Why are we okay with our Primary Care Physician advising us on care? Why not ask questions? Why not test their theory? Why not seek the statistics behind their recommendation and/or treatment to ensure that it is valid and that it works?
I understand that the ultimate decision of treatment/care lies with the patient. That it is truly our responsibility to research our illness/disease, to find the Specialist(s) and to facilitate those conversations and appointments. Yeah, I get that. But when does it become the responsibility of the Doctor to tell the Patient; I am not the best, most qualified Doctor to direct your care for your specific diagnosis? Is it ever their responsibility?
I was very disturbed recently when I was told by a Patient that their Medical Center told them “we are taught in Residency School that if we open up a patient and we see “something like this”, we are taught to close the patient back up and advise there is nothing we can do for them”. Yes, these were the words from a Doctor at a Cancer Center. If the Doctor does not know what they’re dealing with then yes, it makes sense to do that. But to tell them there is nothing I can do for you? Okay they cannot, but can’t they recommend seeking out a Specialist? With today’s technology and online networking can’t they direct someone online to find resources? You’re not thinking with a clear head when you’re first given this type of news, trust me. To give a patient such a grim prognosis and to tell them to go home and “get your affairs in order”, in my opinion, is unacceptable. How can they say that when they don’t really know what they are dealing with? In my opinion, they shouldn’t be.
I can tell you from experience, when you are told “it doesn’t look good and your Husband has about 12-14 months to live”… it paralyzes you. It makes your ears ring to a volume that I never knew was possible. The pressure mounts so quickly and so intensely. It makes you dizzy and your world starts spinning. You cannot breathe. You can’t. Your life, as you see in movies, does begin to flash in front of you. The song of your life seems to start playing and coming to an end all too soon. Why is it okay for them to look at you and apply the ‘textbook treatment’? Why are they not the catalysts? Why couldn’t they say “hold on to hope”, “don’t give up”? Why can’t they remind us that they are one Doctor with one opinion and that there are so many options out there? I’d hate to think there is a motive for not doing so. Let me get my head out of that space as it makes me sick, and sad.
This is your life. Take ownership of it. Ask questions. Seek clarity. Find a Specialist. It is your choice and your responsibility. IT IS ONLY YOUR LIFE. It is okay to question a Doctor; to challenge their diagnosis and treatment recommendation. You have every right and I pray you exercise that right.
Once you have succeeded; share your story. Tell others what you did. Encourage them. Provide them with the confidence they need. Tell them to Hold On To Hope and to Never Ever Give Up. Pay It Forward. That is really why we are here isn’t it? To help others. To give. To love. To be selfless.