Lipoma Support Blog's Creation -- The First Blog

Friday, January 20, 2012

Lipoma Support  Blog's Creation -- The First Blog

Why a Lipoma Blog you may ask? The answer is quite simple. As I sat in bed last night after a year of frustration, helplessness, pain, confusion, and utter disbelief at our medical system and my treatment, I felt that I needed a place to share my thoughts, feelings and you know, vent a little, about my condition and findings.

I know many of you out there are going through or have gone through similar feelings and experiences as myself (as I have read hundreds of your stories and postings). I envision this to be a place of expression, education, and sharing. A future blog about my history and condition will be forthcoming, however I feel it is more appropriate that my first blog be about my intent and purpose of creating a dialogue of personal information and history.

I am utterly amazed that there are so many doctors out there today treating patients, or not treating patients properly, because of their lack of knowledge and/or unwillingness to have an open mind that they may not know everything. Actually, I guess it really doesn't surprise me in the sense that we cannot expect every doctor to know everything about every condition out there. This is why there are specialists. But even some of the specialists don't know everything... even though they might like to think they do. The problem, as I experience it,  is being able to get in front of the RIGHT specialist who actually knows what you need them to know!  In my opinion, these limitations and "red tape" is a huge problem within our Medical System. Many of you know, going outside your "network" if you are on an HMO and the utter "battle" you have to fight to get it covered by insurance is a nightmare.

The other main problem I see, is the lack of collaborative communications amongst your doctors to collectively put their educated brains together and THINK the condition, symptoms, etc. through. Isn't this what makes good companies GREAT? Misdiagnoses, lack of communication, and poor readings of tests is what left my mother in a late stage of non-small cell lung cancer diagnosis with little hope after being misdiagnosed twice with two unnecessary, unrelated surgeries. No, she didn't make it.. and that was over 13 years ago. I'd like to think they we've matured as a society with all of the research out there to be more open minded in the medical community.

Okay, so perhaps I am not your "average" patient who looks at all doctors with googly eyes and thinks they are G-D who I bow down to and agree to whatever diagnosis they come up with. Maybe it is because my mother journaled her condition, pain, and feelings, that I now feel compelled to do the same. Thankfully my father was an incredible advocate and partner for her. Maybe our family experiences with her medical treatment is the fire under my belt that compels me to continue to push to get to the bottom line of what is causing this pain and what are these masses in my body!!

This is your body! Only you know what you feel. I'm more worried at this point about suffering from a heart attack or panic attack from all of the anxiety and stress dealing with these doctors creates. What is my goal you may ask..... To get a referral from my medical group/insurance to see the ONE of two Lipoma specialists in the country (one happens to practice in San Diego, where I reside).

If there is any ONE point I really want to stress in this first blog, it is that I urge ALL of you to be ASSERTIVE, stand up for yourselves... be your own advocate... push these doctors and don't be afraid of  maybe knowing something that they don't. I don't want to lump ALL doctors into this category, because there are some REALLY GREAT ones out there, some of whom I have seen and have nothing but priase for them.For those doctors, I thank you and I go out of my way to let their superiors know how much I appreciate their good "bedside manner" and professionalism!

However, there are still some (young and old) who think that their title as MD gives them the superiority of knowledge and take offense to any patient (with any degree of education or research) who may challenge their diagnosis or treatment. I have nothing but the utmost respect for anyone in the medical field and with whom has a higher education. However, there are going to be patients, like myself, who have some background in biotechnology, research, and through life experiences, have dedicated themselves to immersing themselves in information about their condition or for family members. When a patient, such as myself, goes to a doctor for help, I expect that they:

• 1) Appreciate that I have taken the time to learn about the ailments I am having 
• 2) Listen to what I am sharing 
• 3) Be open minded about what I am sharing 
• 4) Be open minded that they may not know everything 
• 5) Be open minded and not egotistical enough to be able to say.. hey.. I am not sure, let me look into this and ask some colleagues and get back to you.
   

This has always been my approach to  clients in my field of any business I have owned or operated. Am I asking too much? On the opposite end, as a patient, I don't think I know everything; I am open to the doctor's wisdom, and keep and open mind.

Please do not suffer in silence. If you are not happy with the answers or diagnosis you receive. Get another opinion and do your homework.  Do not assume  that just because your doctor does not agree with your or doesn't know that they are always 100% right. This is the most important point I want to make. Do your due diligence, be your own advocate... and don't let anyone stop you from doing what YOU KNOW IS RIGHT based on how you feel.

Also, please be careful about everything you read on the Internet. While I think there is a GREAT wealth of fantastic information which has been very helpful for me, there can also be information that is not accurate. Sorry, just had to say it. With that being said, there may be things I state in my blogs, or comments that others make that may not be 100% correct, or not applicable to your situation.

Please use the information wisely and with caution and take the time to do your research, and share the information with your health care provider. If you are not getting satisfaction and are still in pain, go to the next level, and seek the help of your medical establishment's Patient Advocate or Administrator. You will be surprised...they may well be the key to getting the treatment you deserve and have been seeking (more about that later).


I look forward to getting to know other "lumpy people" out there (I hope no one takes offense to my use of this term. I use it with the warmest of intentions (I do have a sense of humor and that is the comedic side of me, so I do apologize if that offends anyone).

I wish everyone health and wellness in 2012 and I welcome your feedback and stories.

To Your Health,


SDLimpomaGirl