PNA Webinar: Prolactinoma: A Patient's Perspective

The Pituitary Network Association (PNA) is offering a free webinar relating to prolactinomas. Further information about the event and registration details are as follows:

Title: Prolactinoma: A Patient's Perspective Date: Thursday, June 23, 2011 Time: 12:00 PM – 1:00 PM PDT Details Many pituitary patients have had the frustrating, demoralizing experience of suffering physical and mental health issues - that are then dismissed or improperly treated by doctors who are supposed to show compassion and find the answers. Christina O'Neil-Bourne's story is unique, but it is also similar to that of many patients worldwide. Ms. Bourne is not only talented and beautiful (a former Miss Nevada), she will also present a captivating story we all can learn from! The Webinar Presenter Christina O'Neil-Bourne, M.M.E. Music Teacher PNA Board Member Pituitary Patient Christina O'Neil-Bourne holds both a bachelor's and master's degree in Music Education. She teaches general music and band for the Carson City School District. Christina was named Carson City School District Teacher of the Year 2009, and Carson City Rotary Teacher of the Year 2010. She was awarded the President’s Volunteer Service Award by President George W. Bush in 2003 for her efforts. Christina is a former Miss Nevada and competed in the Miss America Pageant. She volunteers her time for organizations aimed at bettering the lives of others through education. In 2005, Christina was diagnosed with a pituitary tumor. For nearly two years, she struggled to find a doctor to help her. She found the PNA website and within months was able to get the medical attention she so desperately needed. Thanks to the PNA, she is now able to live an active and healthy life. Presentation Description The webinar Prolactinoma: A Patient’s Perspective, will be hosted by Christina O'Neil-Bourne, M.M.E. She will share the story of her struggle with a prolactinoma, and also provide information on how she has coped with the effects of pituitary disease on her physical appearance, mental health, and relationships.  •  Introduction: Christina O'Neil-Bourne  •  Personal story  •  Discussion of physical, mental, and relationship changes  •  Discussion of how she coped with these changes  •  Life today  •  Advice for others For those who have not registered, please reserve your free webinar seat now at: https://www3.gotomeeting.com/register/510361454 Space is limited. After registering you will receive a confirmation email containing information about joining the webinar. System Requirements: PC-based attendees Required: Windows® 7, Vista, XP or 2003 Server Macintosh®-based attendees Required: Mac OS® X 10.4.11 (Tiger®) or newer

Sources/links

Pituitary Network Association (PNA)

http://www.pituitary.org/intro.aspx

A Glossary of Selected Medical Terms (a work in progress)

Like any other profession, the medical industry uses specific industry language that can sometimes be tricky to comprehend. Doctors and researchers use many technical terms and Latin nomenclature in order to describe specific diseases, bacteria, human anatomy, pharmaceutical drugs and so forth. I thought about explaining such terms at the end of each blog post, but after much consideration, I decided that it would be more beneficial for a Glossary to be added for better ease of reference. Everyone has to deal with some sort of medical issue at some point in their lives and so it is crucial that we all have access to information that may help us find our way to better health and recovery. As stated throughout this Weblog, I am not a medical or health professional, and the data provided is for informational purposes only and are not intended to replace medical information provided by licensed healthcare professionals. It is important, therefore, that you consult your own doctor for your own individual care.

Using the Glossary

(a) Each term defined in this Glossary is shown alphabetically in bold font.

(b) Terms may be single words or longer phrases and may include domain-specific jargon or abbreviations.

(c) Within the text of definitions, supplementary terms defined elsewhere in the Glossary are shown in italics for ease of cross-referencing.

(d) Within the text of each new blog post, the terms available for access in this Glossary will be shown in bold font.

(e) Glossary entries are provided primarily in US English although UK English is also included where appropriate.

Scope of Glossary

Please note that this Glossary does not provide an all-inclusive list, as the terminology specific to the discipline of medicine appears to be never-ending. Further, this Glossary is a work in progress and further entries may be added with new blog posts. The goal of this Glossary is to provide a quick and easy reference to the meanings of common terms used in the field of medicine. For additional information about the terms defined, it is suggested that you refer to external sources such as those listed in the Bibliography below.

Documents and publications of relevant sources used for the formation of this Glossary are included in the Bibliography. This Glossary is a work in progress and any errors found are my own (I am not a medical professional and I do not have an editor to check my work).

I hope you will find this Glossary useful! 

Bibliography

Parts of this Glossary were brought together with the help of several resources. Valued references include:

Bottom Line. 2006. The World’s Greatest Treasury of Health Secrets. Bottom Line Publications.

Pituitary Network Association. 2007 (4th ed.). It Is All In Your Head! The Pituitary Patient Resource Guide.

Invisible illness: Those who judge

There are many chronic illnesses that appear to be unobvious to those looking from the outside, and some individuals are under the impression that if you don’t look sick then you certainly can’t be sick – Surely your problems are psychological and must be caused by depression, hypercondria or even worse… just plain laziness! This is especially true if one is unable to back up one’s lengthy symptom list with some tangible lab evidence. Contrary to what most people believe, it is sometimes tricky to obtain a definitive diagnoses for some circumstances. Indeed, I once experienced a situation where doctors couldn’t agree on whether or not I actually had cancer. On another instance, they were unable to elucidate why I went into serious adrenal dysfunction. Many years later, these episodes (as well as countless others) have merely retreated into the abyss of my meager memory, with no apparent clarification or remedy in sight. Doctors simply don’t understand what the cause could be, and the medical profession clearly remains inept at observing the body holistically. Meanwhile, I continue to take my roller coaster ride of ups and downs, reflecting times of optimism that is ultimately followed by defeat and disillusionment, and the lingering question of whether I will ever feel “normal” again.

Invisible ailments include such illnesses as Chronic Fatigue Syndrome (CFS/ME), some pituitary diseases, autoimmune disorders, heart disease and even cancer, although this list is far from exhaustive, and I’m sure that many of you will be happy to tell me about your particular situation or ailment. I’m also in no doubt that a number of you will have experienced some negativity or perhaps dismissiveness from some individuals (whether doctors, family or friends), which will undoubtedly cause much frustration and anger. This is a natural human response to situations that seem to be out of our control. Indeed, if we didn’t feel irritated or upset with such a set of circumstances then there would be something wrong! It is my experience that many people who do not have an invisible illness will not fully understand, no matter what or how many times you try to explain it to them. In fact there’s a useful saying in Israel that sums this up: “Let a man shave his own beard”. Some guides have, however, been written on how to communicate such information effectively (I am unable to comment on the efficacy of such material) and you might want to experiment with it to see if it helps (see IDA link for further information).

I try to manage my reaction to such disapproving people by telling myself that I know who I am as a person, and I understand my physical limitations. People may decide for themselves that I look sufficiently well to host the perfect dinner party, but the reality is that if I do too much then “payback is a вiŧ©ħ!” or in more refined vocabulary, I will experience what is generally referred to as “post-exertional malaise”. I have noticed through the years, that many people appear to be on what I term as the “conveyer belt of life” and, as a consequence, often end up being stuck in a rut. I’m certainly not saying that I’m glad to have this awful sickness or indeed would wish it upon anyone else (well, maybe for a week or so, so that they could truly experience and empathize with it!) However, I will say that it has really enabled me to grow in such a way that would not have been possible otherwise. In my prior life (i.e., before the illness), I was a workaholic and was always worried about what everyone else thought about me. As a consequence, I almost drove myself around the bend, continually trying to please others, and as a result, I was repeatedly abused and unappreciated. As my health progressively declined (if that makes sense), I realized enough was enough.

As a chronically ill patient, your priority is to take very good care of yourself, and if someone doesn’t understand that then they are really not worth bothering with – Especially if they are inclined to harmfully judge you. Nowadays, I try to limit my exposure to damaging relationships. I literally wrote out a list of names of those people I had contact with on a regular basis. (This list included face-to-face contacts, phone, calls, emails, text messages, and anything else). I then placed a tick mark next to those whose relationship I had enjoyed, and a cross mark adjacent to those who made me feel bad about myself. I then proceeded to eliminate the harmful ones from my life, and to spend more time with those whose company I took pleasure in. This has worked well for the most part – Obviously, it is not always possible to remove them all, due to certain responsibilities and so forth. Some family and work relationships could certainly pose problems, as it’s not always viable to just ignore them. However, it can be better to even avoid family ties if they become detrimental to your well-being.

On occasions when forced into a negative setting, try to take stock and “step out of the situation”. I know that sounds rather whimsical, but if you can, try to see the bigger picture and to acknowledge THEIR limitations, NOT yours. You are in charge of your own feelings. Nobody has the right to make you feel any particular way – Only you have that right. With a chronic illness you have enough to contend with. Let them just “get on with it”.

I hope this post will be of some help and consolation during difficult times. Just remember, if you can stay relatively sane through a diabolical illness, then that makes you a particularly strong individual indeed… Personally, I think that having an invisible illness is the “mother test of life”.

Resources:

The Invisible Disabilities Advocate (IDA) - http://www.invisibledisabilities.org/

Invisible Illness - What You Can't See Does Hurt Her - http://www.socialworktoday.com/archive/novdec2007p18.shtml