My final salute to my amazing Endowarriors

The time has come for me to bid farewell to the Endo community. I never thought that I would even get to this point but I have. There are mixed emotions but mostly relief. I am tired of advocating, tired of supporting other, tired of talking about a disease that helped destroy almost my entire life. 

I have met some really amazing Endosisters online which I still plan to keep in touch with but will no longer be on social media relating to Endo. 

I have hit a point in my life that Endo is now at the bottom of the chain when it comes to quality of life and I have other things I need to deal with. I have been suffering greatly for the last 3 yrs mentally, physically and emotionally and I can no longer be there for others or to educate them or to even talk about Endo. 

I hope that I left a mark in this Endo world and that I helped some people along their journey's as that that was the only thing that I wanted to accomplish. "That no women was to ever fight this disease alone" 

My last post on my Faces of Endo Facebook page is below. I thought I would post it because I will be closing it down within 6 months. This blog I just might leave open. I worked really hard on it and I hope that others can benefit from what I have been through. 

FACEBOOK FINAL POST 

It is with deep regret that I must tell you all that I will no longer be advocating for endometriosis. It has been a long battle for me starting at the age of 13 and continuously advocating night and day for the last 5 yrs.

I suffer from complex PTSD and Major Depression with anxiety, TMJ and Fibromyalgia as well and things have taken a turn for the worse and I am just not getting any better.

I have taken all my energy to help and educate women all over social media worldwide so that the next generation does not suffer the way we have.

It is long overdue that I take care of myself and pass the torch to my fellow endosisters to continue to raise awareness even when it seems there is no change happening. Keep fighting! 

I thank each and every one of you that have helped me throughout the years to make these projects happen and the friendships that I have made.

I am forever indebted to the women that heard my silence and knew I was not okay, messaging me daily/weekly to check in on me constantly to see if they could help me through the dark times. I owe you so much because of you I never took my life when all I wanted to do was leave this earth. Your friendships will never be forgotten.

I will eventually close this page in the next 6 months as well as my Instagram account, twitter and pinterest.

The next steps for me is dealing with the CPTSD that has taken over my entire life and I hope you all respect my decision.

Thank you.

Mesa Legend Community College "Faces of Endo" article

Thank you Nikki Waldmann for running an article on the Faces of Endo.

See link to article here 

The Faces of Endo 2016 Part 2

The Faces of Endo 2016 Part 1

I have almost made it through 2016

I am not sure how I made it through most of this year but I did and these are some amazing things that happened and awesome people that are in my world. 

The Faces of Endo is back!!

It has been 2 yrs since I started #Thefacesofendo and I struggled to find new ideas of what I should do next to raise awareness. I suddenly realized that this is what people want. People want to know that they are not alone and that their voices are being heard. 

This brings us to the updated #Facesofendo 2016 in which a new video will follow in November. 

Please come see some of the new faces for 2016 HERE

My light was meant to shine

For as long as I can remember I have suffered a lot of trauma and not just with Endometriosis. It took decades for me to find my voice and during that entire time I had so much resistance from others around me. When I would talk people about Endometriosis or Fibromyalgia to people (including family and friends) they would either look in a different direction or changed the subject on me, and sometimes in mid sentence. They would feel so uncomfortable with me talking about it that it made me feel like there was something wrong with me and that I was alone in a dark place all by myself left to tackle these diseases in silence. 

 Then there were others that used my voice to their advantage to better themselves and take the credit for the hard work that I had accomplished. 

Let's just say that for the last 6 months I shut down completely because I truly felt that I did not have any support whatsoever... Well that is not exactly the truth. I have had some really true genuine friends that have battled along side me through thick and thin and I am forever indebted to them. 

I think it hurts a lot because the people that did this to me were family and close friends I have known a good portion of my life. I have one friend in particular who I have felt distant from and it is only getting worse. It is almost like the friendship is not there anymore and maybe it isn't. Maybe I know that I need to move on from these people that could care less about my physical and mental well being. 

I stopped all my advocacy work because I lost my voice again due to compromising my own heart and soul to make others feel comfortable. I allowed this. I don't even know how because I never thought that there would have been a day that I stopped spreading awareness about Endometriosis. It is in my blood and this is my purpose in life, this IS what I am called to do. 

 I have learned a lot in 2 yrs and what I know is that I am a light to others and a voice to those who are silenced just the way I was. I can't let those people down. I know my purpose is to help them and if any of you see my light dim, please talk to me and remind me why I do this. 

2 Years Post Radical Hysterectomy

The last two years I can honestly say have been insane

I always thought that because I never really had huge side effects from Lupron like crazy hot flashes and joint pain things would have been different for me after my surgery. Even for the first month I felt like I had be saved from all that mess. I soon realized that was not the case and that I really feel that I literally went to hell and back. (This is not at all an exaggeration)

The best way for me to describe surgical menopause without any form of  HRT is like continuous torture of the mind, body and soul and losing hope that things will always and forever remain the way it is. I felt that things were at a stand still yet I felt at the same time things were going on continuously in fast forward speed. Every half hour I was completely taken over by hot flashes and I watched what I ate and drank in order to try to stop them but that really didn't make a difference. I felt like I wanted to scratch peoples faces off just for talking to me in a way that I took offence to. My body morphed into something similar to the Pillsbury dough boy with dark loose bags under each eye. There were days that I would look in the mirror and be in utter tears because I felt that I looked so much different.. ugly. fat and my self esteem took a huge nose dive. I could barely pull myself out of bed each morning, I stopped cooking, I stopped cleaning, and I stopped taking care of myself. I was just existing/surviving and not living. I will admit there were times I just wanted to end it all because I did not see this torture ending any time soon if ever....

I am still not sure how it happened but one day I just woke up and I didn't feel the same way physically and mentally. My mind was clear, the hot flashes were gone, and I felt happy for the first time in a long time. I would say the only thing that has not improved symptom wise is the overwhelming feeling of being tired and not having energy for anything....and bladder leakage ugh!

That being said I can look back now to where I came from at 13 yrs old and see where I am today with this disease and I can finally say that I am on the road to living... not existing but actually living. The quote  "You've seen my decent, now watch my rising" is truly perfect for me right now and where I am with my journey.

My mantra is "Still I rise" and I do just that.

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.

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. !! 

Head in the clouds for the last 9 years

I feel compelled to speak about what I have been going through the last two years. Although many know I love my red wine almost no one knew my addiction to Oxycodone.

Since my first Endo surgery in 2007 I have lived on many different medications. I don't even remember what it is like to not be on any.

Chronic pain has plagued me since I was 10 years old along with severe TMJ, depression, anxiety and PTSD that followed.

I have been a guinea pig to doctors because they could not help me. Instead of them being open and honest with me, they shamed me and made me feel like my pain was not real and that just led to me to a darker place every time I had a doctors appointment.

To fast forward to how I got addicted to alcohol and opiates is not quite simple to explain. The wine came first that I know. At first it was a glass now and then, then I would drink a glass or two when I got home in order to cope being a single parent in pain. It then turned into a couple of bottles a week, then to a box of wine that would last less than a week. My desire to come home and have a glass was strong because it made me relax, escape as well as not focus on the pain I was in daily. Besides smoking wine has been my most difficult crutch to get rid of.

I suffer from Major depression so I am either low or suicidal low no matter what medication I am on it just doesn't seem to help and that is where the wine would come in to play more because I was just trying to cope with everything happening to me as well as around me.

In February 2014 I lost my job of 10 yrs which ripped me to pieces mentally. In May I had my radical hysterectomy which led to me being on a cathedar for 11 days because I could not urinate. In June the prozac I was taking for depression and anxiety sent me down a dark spiral turn to suicidal thoughts and I was so close on acting on it because I was having visions of slitting my wrists and cutting my entire body with a razor. I was taken off Prozac and was given Serequel to bring me down from the panicked state I was in which helped. Then August just 3 months after major surgery I woke up to excruciating pain down both of my arms. I had edema in both limbs and I could not bend my fingers or elbows and it lasted for 3 months.. I would take Oxycodone for my jaw in the winter when it got really bad but for the most part the drug itself made me more sick then it did help me. However when I lost feeling in my arms and the pain was so intense I was on 2-4 pills a day just to get through the day. I started a new job at the end of September while barely being able to even hold a pen. In October I separated from my then husband and was a single mother once again and in the state I was in, I really felt I was not fit to have my daughter but I was alone and suffering.

That my friends was only 2014....

In 2015 I had no other choice then to sell my town house that I loved and worked so hard for. I just could not afford to live there. I had some amazing friends that did come over and help me paint some rooms in order to list it. It sold quick and I moved into my new condo in May in which my mother had to co-sign for because I could not afford to even get an apartment for the salary I was making even though I put a lot of money down. It was humiliating and it made me feel just more and more inadequate as a human. I was given a anti anxiety med since my constant panic mode would not cease but I didn't feel like it was doing anything. For around 6 months I was switching back and forth with that med, the oxy and wine along with my sleeping pills and muscle relaxer for my jaw. I had multiple oxy black outs but at the time I didn't realize that was what they were called. I just could not cope at all and needed to have a breakdown but that just could not happen because I financially could not do it. I don't even remember most of last year because suicide was on my mind for most of it. In May I started to also develop burning mouth syndrome which I continue to have a problem with still and I really don't know if it is the wine, oxy, cymbalta or menopause that has caused it. Sept 1st I was awaken out of my sleep by my neighbour telling me that my balcony was on fire. The HVAC unit overheated and destroyed all the stuff on my balcony as well as my HVAC unit. It took up until recently for them to even repair the basic things so my head was spinning fighting back and forth with the condo corporation. From October to December I really started to get into meditation and really focusing on just positive vibes, leaving those that complained all the time, or asked too much of me blocked and out of my life. I also started EMDR therapy to deal with the PTSD and to learn better coping mechanisms. Well that totally made things worse even though I started to see things differently so the abuse of oxy and wine just continued to happen.

That was 2015...

Here I am now in 2016 determined to cope in healthy ways and stay clear of any medication. My goal is to come down to 30mg of the cymbalta by end of March and off it completely by June. I know this is going to be so much harder to do because I have come off it years ago and it takes a good 2 weeks to come out of your body and I worked through it the last time, this time no way. My next goal will to be to come off the flexeril about a month after coming off cymbalta. The reason for that is the cymbalta has made me increase the flexeril because it causes me to clench and grind so much so it has been helpful and is not addictive to me. The last thing I come off of will be the sleeping pill I have been on for 3 yrs. That will be a tough one and I am in no hurry to come off it has I have suffered from insomnia since I was 15 and it wasn't until 3 years ago that I finally knew what it felt like to actually sleep a full 8 hours not just an hour or two.

2016 for me is a year for growth spiritually and I know it is going to be a hard year but I believe that I have the strength to get through it considering all that I have been through. I have not yet had a bone scan so that will be what I plan to do as well as I have not taken any HRT since my hysterectomy and I don't plan to.

I share this information out there because I know there are many going through this same type of medication cycle and it is hard to see a light at the end of the tunnel, but I am here to tell you that you can and I believe in you and I know it is hard. I still struggle so much but when I look down at my wrist I remember always that this is not the end of my story. This is not how my life will end.