This Day In History. AKA Why I've been quiet this last year

Warning : Explicit Descriptions of Medical Issues Will be discussed here .....

On May 10, 2015,  I discovered that I had a bloody discharge coming from one of my nipples. With my medical background, I knew immediately that since I was not breastfeeding & hadn't given birth in just over 18 years at this point, it was very likely some form of cancer.  I handled all that came from that point forward very clinically.  Knowledge is power when it comes to your health.  In order to make an intelligent decision about your choices, you have to know everything!  

I had put off my mammogram 4 years as I was dealing with my fibromyalgia and diagnosis of it, not to mention the discovery of a benign brain tumor.   The ironic thing was not even 2 weeks before I had told one of my best friends that I felt stable enough and the weather was improving so I was ready to go for my mammogram.   Monday morning arrived and I called the hospital to schedule my mammogram since my gyno had already given me a prescription.   The scheduler was very nice and handled everything like a consummate professional.   I explained the situation and she explained to me that I would need a diagnostic mammogram but she could call my doctors office and get the necessary prescription.   Unfortunately, my doctors staff was anything other than professional.  It seemed as though they were angry that I was knowledgable and they refused to issue the prescription.   The hospital would have done my mammogram that day at noon and then I would have had the results to take with me to the doctor that afternoon.  The scheduler went ahead and put me in for the next day and the staff member got very nasty telling us that should the doctor decide that I needed an ultrasound that the hospital wasn't going to be able to accommodate.   To which the scheduler responded telling her that if I need if they will make sure I get it because they understand his important this all is.   It was crazy!     So, it was pushed back a day so I could go in to the office and have the doctor tell me that I needed a diagnostic mammogram. 

I went in to have the mammogram and we discovered that I have dense breasts and needed an ultrasound.  The hospital called the doctors office and got a prescription to perform it from another doctor in the practice since my doctor was off that day.  At this point, the results came in of my testing. They were inconclusive.   Basically, they said if I kept bleeding that they recommended further testing.  

I tried to get a hold of my doctors office to discuss what the next step was & I couldn't get anyone to call me back.   I tried for a couple of days when she finally returned my call.  She responded by asking me why I was calling her since she had called in the prescription for an ultrasound the day before.   I quickly explained to her that I had had the ultrasound 3 days before.   Immediately, her tone changed. She hadn't been informed and had only been given part of the results by her staff.   I explained the results and asked her what the next step would be, she said she would find the results and call me back but get most likely, she would be referring me to a specialist.   

While she looked for my results, I called Sloan-Kettering and was scheduled with a high risk breast specialist that took my insurance got the following Monday.  

The lesson of this story, which will be repeated several times as I tell it, is be your own advocate,  even good doctors can have bad staff, listen to your body, normal results or inconclusive results do not always guarantee that everything is fine......To Be Continued .....

Words of Advice

Listen to your body, be your own advocate, doctors don't know everything, seek out all the information you can from reliable sources so you can make educated decisions! 

Fibromyalgia Awareness Day! What the heck is that???

Today is National Fibromyalgia Awareness Day.  

For those of you that don't know what it is & are interested in learning a little about it...Here I go to the best of my ability

 Fibromyalgia is a musculoskeletal disease that affects the nervous system.  The best way I have found to describe it is that basically your entire nervous system goes into overdrive and becomes hypersensitive.  So much so that even the touch of fabric upon the skin can cause great pain.  It is not fully understood nor is there a cure at this time.   It can present differently in each individual person but most people that have fibro have had some sort of physical trauma in the past, be it a  car accident, chemotherapy or abuse to name a few.  

There are numerous symptoms that are associated with fibromyalgia. . Its characteristics include widespread muscle and joint pain and fatigue, as well as other symptoms. Fibromyalgia can lead to depression and social isolation.Some patients with fibromyalgia have pain and achiness around the joints in the neck, shoulder, back, and hips. This makes it difficult for them to sleep or exercise. Other fibromyalgia symptoms include:

Abdominal pain
Chronic headaches
Dryness in mouth, nose, and eyes
Hypersensitivity to cold and/or heat
Inability to concentrate (called "fibro fog")
Incontinence
Irritable bowel syndrome
Numbness or tingling in the fingers and feet
Stiffness


The disease can range from mild to severe and everything in between.  Some people are fine most of the time unless they are having a flare while others(like me) find that the symptoms never go away but sometimes are a little less than others.  

Treatment for the disease can include one or any combination of all of the following:  Medication, lifestyle changes, medical marijuana, gentle exercise, alternative therapies, massage therapy and/or physical therapy.

Results vary by patient just as the disease varies by each patient.  

People don't always know what to say or what they can do if they know someone and/or are friends with someone who has fibromyalgia.  The best advice I can give is to treat them as you would want to be treated(as you should always anyway throughout life).  Don't judge. Be kind.  Be a true friend.  Be open to the information that is readily available to learn more about the disease.  Don't forget that they are still the same person you always knew....they just may not be able to do the things they did before.  Be patient with them, in most cases, their entire lives have changed and their bodies have betrayed them. And last but not least, ask them what they need or want.

Thank you for taking the time to learn a little more about a not fully understood disease.   Please share this ...you never know who you may be helping.  A little awareness can go a long way!  :)  

ATTN: FIBROMYALGIA FRIENDS, FAMILY, LOVED ONES & CARETAKERS TAKE NOTE, YOU CAN HELP!

On March 26, 20I4, I had the opportunity to actively participate in a webinar/meeting with the FDA.  The subject of the meeting was " Fibromyalgia Public Meeting on Patient Focused Drug Development" The purpose of this meeting was to discover, from the patient's point of view, what the FDA/researchers/drug companies can most do for patients to help alleviate symptoms.   The information from this meeting will be publicly shared with not only drug companies but also researchers.  It is our chance to be heard.  

I am going to post the link that the FDA provided as they are encouraging patients, caregivers, and other stakeholders to comment upon the meeting and the questions that were posted that were the basic guideline for the meeting. In OTHER words, they want to hear from you too.   

I feel strongly that as a patient, of a disease that there is no cure for and they aren't even sure of exactly why we have this disease, that we have a responsibility to ourselves to try to help researchers & doctors to find the answers we need so that maybe we can play even a small part in finding a cure for our disease and gaining back some semblance of our former selves. 

When commenting, as a patient, we can answer the questions listed and provide any other information that we feel is pertinant and helpful. They welcome comments though from anyone who is effected in any way by this disease so please share this link with your loved ones so they may comment also.   Here is what the FDA had to say after the meeting: 

"We know that not everyone who wanted to come to this meeting was able to attend. For anyone who missed the meeting or is interested in what was discussed, we have posted a full recording of the meeting on our website: 

http://www.fda.gov/forindustry/userfees/prescriptiondruguserfee/ucm363203.htm

In addition to the input we gathered at the March 26 meeting, we encourage fibromyalgia patients, caregivers, and other stakeholders to submit written comments to the online public docket. 

The comment period closes on May 26, 2014. 

Submit your comments through this website:

 http://www.regulations.gov/#!documentDetail;D=FDA-2013-N-1041-0004

FDA is particularly interested in hearing patients’ perspectives on the questions outlined in the Federal Register Notice that announced this meeting. These questions are pasted below for your reference, and the Federal Register Notice can be found here: 

https://www.federalregister.gov/articles/2013/09/23/2013-23019/fibromyalgia-public    ...." 

The focus was truly on the following questions (as provided by the FDA): 

Discussion Questions
Topic 1: Disease symptoms and daily impacts that matter most to
patients
1)      Of all the symptoms that you experience because of your condition,
which 1-3 symptoms have the most significant impact on your life?
(Examples may include chronic pain, fatigue, difficulty concentrating, sleep
disorders, etc.)
2)      Are there specific activities that are important to you but that you cannot do at all or as fully as you would like because of your condition? (Examples of
activities may include sleeping through the night, daily hygiene, driving,
household chores, etc.)
a)      How do your symptoms and their negative impacts affect your daily
life on the best days? On the worst days?
3)      How have your condition and its symptoms changed over time?
a)      Do your symptoms come and go? If so, do you know of anything
that makes your symptoms better? Worse?
4)      What worries you most about your condition?
Topic 2: Patients’ perspectives on current approaches to treating
fibromyalgia
1)      What are you currently doing to help treat your condition or its
symptoms? (Examples may include prescription medicines,
over-the-counter products, and other therapies including non-drug
therapies such as exercise.)
a)      What specific symptoms do your treatments address?
b)      How has your treatment regimen changed over time, and why?
2)      How well does your current treatment regimen treat the most
significant symptoms of your disease?
a)      How well do these treatments improve your ability to do specific
activities that are important to you in your daily life?
b)      How well have these treatments worked for you as your condition
has changed over time?
3)      What are the most significant downsides to your current treatments
, and how do they affect your daily life? (Examples of downsides may
include bothersome side effects, going to the hospital for treatment,
restrictions on driving, etc.)
4)      What specific things would you look for in an ideal treatment for
your condition?

My hope is that this post has been helpful and informative.  Additionally, I hope for relief of our symptoms to be in our near future!   (((((((((Gentle hugs))))))))) 

"Invisible"

I'm posting yesterday's photo a little late.  

Today is the 4th day of pain from the storm that arrived today.  The thing with this invisible illness is that it always reminds me whose in control.   I was sitting resting watching tv to distract myself from how horrible I've been feeling when I noticed that my cheeks are covered in tears that I had no part in creating.   They were just there.   My body's way of acknowledging that no matter how hard I try to ignore how bad it is, my body can not ignore it......I think I need to move somewhere warm