Thursday, August 18, 2016

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. 

Tuesday, June 7, 2016

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.

Tuesday, April 26, 2016

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.