Wednesday, March 30, 2016

Celebrating small victories & moving on

I felt it was time to post some small victories that have been taking place in my life. 

As most of you know I am almost hitting my 2 year post radical hysterectomy for Endometriosis and I haven't taken any HRT to date and I was a mess for most of this time period. (See prior update here)

As of today I am almost 100% drug free (sleeping pill being the last) and I have barely touched a glass of wine in over a month as well. I really feel accomplished and happy that I decided to come off all of it.  I decided to take the risk of dealing with the Fibromyalgia pain without medication and have been actively meditating since October 2015 to help cope with anxiety and major depression. 

I know everyone's journey is so different on all levels as well as how you feel post hysterectomy and I really feel for me that for some reason my body was allergic to my own hormones. Mentally they really messed me up including migraines for over 15 yrs, depression, anxiety, acne, up and down moods, and constant craving for carbs. I feel as though I have definitely improved in this area but it wasn't easy as I struggled for the last 2 yrs post op just trying to survive. It was a horrible ride and I really don't know if it is completely over but I am moving ahead with my life if it is or not. 

I have realized that Endometriosis controlled 15 yrs of my life due to delayed diagnoses and after my first surgery in 2007 it completely took hold of my every thought and move. I spent the last 4 yrs on-line everyday on various social media outlets as well as Medhelp 24/7 and I have come to the conclusion that if I continue to live my life this way I am actually going to miss life in general and I have come too far to let "THIS" be my life on earth.  

I let this disease control my life and I have decided that after the Endo March in Canada May 7th, I will no longer be as active about raising awareness online. I am going to keep up my blog because for me this is my outlet and some people want to hear from me but basically this is it (Maybe I will start a new one with fun things?). I can't keep draining my own soul in order to do for others and I have been running on empty now for the entire 4 yrs I have actively been raising awareness. 

I didn't come to this conclusion overnight it has been a long time coming. I love all the people I have met over the years and I love that there are so many more advocates out there now more than ever but it is time for me to step down and finally move on. I realized how permanent I need to make this because for the last 9 yrs I have not made a video for my daughter. I used to make them all the time. Her first time riding a bike, singing, parties, etc. I have totally not mentally been there for my own child and this is not okay. All she has known is Endometriosis and I don't want that to be what she remembers when I am gone. 

So I thank everyone who has made a difference in my journey, who has educated me, who has been there for me in the late/early hours when I wanted to give up and end it all. You all have helped make me into the person I am right now and I will take all this with me as I move onto the next chapter of my life...

Friday, March 25, 2016

Mirror, Mirror on the wall who's the best Endo surgeon of them all?

I am sure the title of this post caught your attention and that was my intent. 

There has been a lot of friction in the Endometriosis community when it comes to surgeons and who is the best. There are people that I have started calling "Surgeon Groupies" who follow certain surgeons and feed off everything they say. They often trash other surgeons theories and capabilities on-line for all to see or they promote them like they were marketing more surgeries for them.  

Then we have surgeons who actually think they are the best or the Gods of Endometriosis and this certainly doesn't help patients at all it just makes ones newly diagnosed confused on who and what to believe. 

This has become so frustrating being a person that talks/supports a lot of Endo patients around the world because the fact remains that every surgeon is human. Surgeons make mistakes, surgeons have victories, surgeons have feelings, surgeons have gone to school for years in order to do something they love doing, and some also have huge egos. We as patients forget this sometimes and it really doesn't help our cause. 

So how do we as patients know what to believe? Well that is a tough question to answer and I can only speak from what I have learned reading on-line, talking to other patient advocates and surgeons and from my own common sense. 

There is no cure for Endometriosis. Period. If there was we would also know why some women get Endometriosis and why some don't, and why some get it so severe and some that don't feel pain at all. With that being said there is no guarantee that with excision surgery you will be free from Endo. Yes, some will be pain free, some even never even think of Endo again, but then there will be others that just do not get relief and there are many reasons for that. 

I truly believe that you as a patient can't put all your faith in a surgeon to heal you from a disease that there is no cure for. Yes, you want the best one who has the skill and knows what to look for and be able to remove off multiple organs, but you also have to work on other areas of the body as well like doing pelvic floor therapy, meditation, maybe even psychotherapy to deal with the trauma of the disease, work on your diet, lifestyle as well as grieving for the life you once had before Endo took hold of it. There is a whole process that needs to be done and as exhausting as it is you really need to see the whole picture. Stand back and take it in and go forward. 

In closing I think we need to stop putting this huge expectation on these surgeons being miracle workers because this is a very complex disease and everyone of those surgeons may be good in their own way but not one of them is the best because if there was a "BEST" we would all be cured. 

If we want change, excellence centres and research done so that there can be a cure we need to stand together and stop bashing these doctors and band together. We need to attend awareness events, fundraisers and stop making excuses why you can't go. If you want change you need to be the change as well.

Wednesday, March 2, 2016

Endometriosis Awareness month is back again...2016 Style :)

(Unknown source for photo) 

Here we go again.... It is now 2016 and we all have been pushing hard to get more awareness raised in the last 3 years and I already feel that we are getting closer and closer to at least the next step in better treatment. Baby steps seems like the way we have been going but forward is better than backwards so I will take as little or as much as we can get at this moment. 

I have had the pleasure of knowing some amazing patient advocates over the last 3 yrs that have helped me through my struggles dealing with this disease mentally and physically and I have made a video for them because they are just so awesome and I can't thank them enough. !!