Healing doesn't mean the damage never existed

Photo credit :Warriorgoddesstraining

I promised myself and others that I would continue my blog even though I no longer advocate at the level I once did. I can tell you right now, that in itself has been a huge eye opener and a spiritual awakening. 

I allowed myself to be controlled by a disease(s) for over 25 yrs and consumed myself in literature, research all just to prove that something was wrong and it took so much of my life away. 

I didn't enjoy anything about life whatsoever, not even people. I wanted everyone to stay away from me and stop talking because I was so angry at my situation and in pain that it was all that I could focus on. I pushed so many people away because I felt they didn't understand and really how could they? 

December 24th 2013 I started to take back my life.  So looking back at it now I feel that this was Step 1. I felt enough was enough and so I wrote my surgeon this letter and mailed it out. (See the link here) it wasn't long before I got an answer and was in his office. 

Step 2 was May 9th 2014 in which I had a radical hysterectomy done along with excision surgery (See the link here)

Step 3 was happening between 2014-2015. It was a long horrible point in my life and going through a hysterectomy with no HRT is bound to make it that more eventful. I lost my job of 10 yrs, had major surgery, lost feeling in my arms for 3 months, started a new job, separated from my husband, sold my house, bought a condo, and had a fire in my condo all within this time frame... Bad luck people might say but I was meant to go through all of this in order for me to let go and move on. By the end of 2015 I knew it was time to get help for what was mentally plaguing me (Complex PTSD). I wanted to be free from anything that was making me feel negative or think about my past. For me triggers have always been there and I constantly lived in the past. I tried so many different types of therapies but I knew that there had to be someone out there to help me. My sister suggested EMDR therapy.

Step 4 took me to my first email to this therapist. I searched online for one close to me and since I have actively wanted to get help and not just say I wanted it, I let the spirits guide me to this person. One stood out so I took that as a sign. I emailed her my story and told her that I didn't want to waste time discovering who I was and just get to the point of what I need help with and why and go from there. At first I thought she was going to think I was a nut job but she responded back fast and was comforting and inviting. I saw her for about 15 weeks straight and during this time my meditation increased and my focus ultimately was to relive and let go of all the pain and suffering. It was all very overwhelming and during this time I was drinking a lot and taking Oxycodone just to numb everything that was going on. I told her that I wanted to take a break over Christmas because I had so much stuff to get done and I needed a break. I never did go back to her because during that time I had a good couple of months to process everything that had happened in my life and that moves us to the next step. 

Step 5 started at the beginning of this year. I was feeling lost, confused, underpaid and just not wanting to live. Well I wanted to live but not the way I had been. This is when I wrote this post here (See link to post) I knew it was time to make the change with my medications, my drinking habits and the fact that I had wasted 25 yrs sick, looking for a cure, looking for someone to listen to me and trying to figure out why the hell I was dealt this deck of cards. I was making myself sick just thinking about it. I mean literally. I didn't want to talk about anything that related to illness, I just wanted to move on and live the next years of my life (however long that may be) not feeling sorry for myself and actually stop letting all of this control me. So I took charge. 

Step 6 I had made great progress (See link to post) I didn't think that I would make it to this point. I was determined and goal focused to come off all the medications I was on and currently only have a sleeping pill which I am working on coming off with my doctors help. This will be the hardest challenge to date for everything because I have been on it for 4 yrs and it has saved my life. I went over a decade only getting an hour sleep per night and which possibly started this whole cycle of pain (which was diagnosed as Fibromyalgia in 1997) For the last 5 years my endless nights of worrying stopped and I feel even without the sleeping pills they have stopped so I know it is time to figure out how to make myself tired on my own instead of taking a pill. 

Step 7 I am going through as I write this post. I am back to reading, meditating, eating a lot healthier and have goals in mind. I am looking to finish off my Endometriosis Biography (which couldn't have happened if I wasn't at this step) that I started 3 yrs ago, I plan on starting off with just stretching and simple palates and yoga and hopefully be down to a more reasonable weight by the end of the year. I am not thinking any further than that because I know baby steps are the only way I will make it there and from past experience. I feel free mentally. I am not depressed anymore, I have no anxiety, I feel hope, I am so mentally strong at this point and I know I am never looking back. I am looking for jobs that would suit my personality and lifestyle rather than the stressful jobs with no purpose like I have always done and I am staying single. I love being single it is so empowering and peaceful. I haven't ruled out love in all of that but it just isn't what I am looking for and if I am meant to find it I will.

The key for me in all of this was that I started to cut toxic people out of my life, I stopped looking at negative posts and would only focus on positive inspiring things. I would always see people say that they hated people who posted things like that because it was just a cry for help or something like that but it was the complete opposite for me. I was retraining my brain to focus on positive things and people and it took a long time for my brain to be able to digests all because naturally I had a negative attitude and thought process for so long. It wasn't easy but I tricked my brain. I know that sounds messed up but I did. As soon as I sense a bad vibe/aura, posts or people are negative around me, right away my body changes. I know I can stop it, I have that control no matter what is going on around me. I had to change. I mentally had to see that there was more to life even if I am in pain. The less I focus on it the more I live in the now. I am present. I am here.



So that is all for now and thank you for all of those who inspired me without even knowing it during the last two years.

Endowhat Premiere Toronto

I have been anticipating this event for months and it finally came.

I remember being in middle/high school and always having to watch these sex education movies and thinking even at that time they were so out of date (literally made in the 70's). I felt so proud to be sitting there in the audience experiencing history being made.. just saying that is giving me chills as we speak. From the moment it started I was in tears. I was just so happy that after all this time finally we had something to use as a tool for education. 

The part I love about this movie and its purpose is below and what their plan is going to be. This is huge!! This means that finally people will get the most up to date educational information since.....  the "Sampson theory" (1920) So this is why I am so excited about it.

Shannon Cohn did an amazing job with this movie and gathered a lot of big players out there in the Endo world. I was so happy to see familiar faces on the screen because it made it real for me. 

My mother and sister came out and it was the first time they had ever come to an Endo event. Needless to say my blog has been my venting place as I didn't have support the last 25 yrs living with this disease. They finally got to see what have been living with and for the first time in my life I feel validation because I truly believe my mother had no idea that it was this bad and feels horrible for not being there all these years and me suffering alone. 

So Shannon thanks for making it a night I will never forget. 

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...

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.