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.

How long does surgical menopause last?

I haven't written in a long time and it is mostly because I have no idea what is happening to me. I just don't feel normal and I am not sure why. Yes I still have hot flashes but the Cymbalta definitely helps to lessen them as well as helps my bladder spasms. 

Here is the thing.. My nose, ears and mouth are completely dried up. My eyes perfectly fine and many tests that I have had came back negative for ANA/RA so no Sjogren’s syndrome, so I am completely confused and living in utter hell at the moment I would say. My inner ears are so itchy and sometimes its white and flaky which has never happened before. The other day I did notice almost a red ting to the ear wax. My mouth on the other hand, wow it just never ending thirst. I drink at least 4 liters of water a day and I just can't quench my thirst. I started to develop "Burning mouth syndrome" which I thought was from upping the Cymbalta but now I don't know what it is from. My nose has been dry the longest. It started when I was on the continuous BCP 2008 and it has never gone away. I have tried so many things and at one point I was told it was a tiny cyst and that was removed and now its the other nostril but it just seems dry and my nose NEVER runs even if I have cold.  

I have yet to take HRT because everything else is fine, I think. I am 38 and my hysterectomy was May 2014 so that is coming up to 2 yrs. I am utterly confused about this subject. I know that I am young and that I already have mild osteo in my jaw but am I setting myself up for more problems if I take it? My worry is heart disease mostly because it runs in my family and I have been having a lot of heart issues with anxiety which I truly think was brought on in 2007 when I was put on Lupron. I didn't think of it until now and it scares me to go on anything else which could increase my risk.

Seriously though, when does this end... When?  

If anyone has any suggestions or is going through the same thing I would be more than happy to hear from you :)

Save the date for Endomarch Canada May 7th 2016

I know what you must be wondering. "Why is Canada doing their March in May?" Well the reason is that it is just too damn cold here in Canada and we have had really cold weather the last two marches. The first one was -30 degrees and last year around -15 to -20. So that being said the TENC board members made a unanimous decision to have it May 7th 2016.

During the Worldwide event in March we will be virtually raising awareness by doing the annual #awishnoted campaign as well as heading down to the CN Tower in Toronto to see it light up yellow for Endometriosis.

This way we get the best of both worlds and we don't freeze our butts off.

Stay tuned for updates!!

Motherhood with Endometriosis

Infertility and Endometriosis is something that is talked about a lot these days and so it should be. It is something that is now getting more recognition in the last couple of years due to so much awareness from those that are infertile and those that are still struggling to conceive. Many of the women I have talked to and/or know that are going through this I truly empathize with.  

I really do wish my blog had more to do with infertility but I write from experience and for me after I had my daughter which I believe to this day is a miracle I never tried to have any more because the pain and suffering I went through with her alone was more than I could bear. 

During the first years of my daughters life (not diagnosed still at this time) I honestly thought I was losing my mind and the bowel pain I was going through was only getting worse. One night I actually saw demons that now I can describe as dementors (Harry Potter) I was literally losing it and I was yelling at my daughter and could not get any sleep as she was a very high maintenance baby and I was a single mother with no support in the early years. 

I had a dream that my daughter was hanging out the window and was calling for me and I just let her hand go... I watched her fall and I felt a huge sense of relief.. then I realized "what the hell did I just do?" and ran down to get her.. In my dream when I got there she just looked at me with this look of fear... of me... 

Around the time she was 3 years old I decided that I couldn't take much more after watching a program on Rogers TV about Post-partum depression and although she was 3 I really felt that I had that. Once I talked to the doctor in the ER he told me I just needed sleep and gave me sleeping pills. What if I wanted to kill myself? 

Around this time was when the 10cm complex cyst was found on my left ovary. I had been given marvelon (BCP) to deal with it and within a week it was night and day. I can't even explain the difference it made for me mentally. It was like I had a renewed life and I felt happier, I wasn't depressed and felt totally different with my daughter. 

So that being said most of my child's life (she is 12 now) has been filled with pain from Endometriosis, Chronic Fatigue and Fibromyalgia. It has been a constant battle to be a parent. There are times when I wish I never had a child and wish I could run away. I want to tell people with Endo not to have children but that wouldn't be right because my circumstances are much different than others. 

Being a parent with Endometriosis has been a life of saying I am sorry for being tired, I am sorry I need to lie down, sorry not today, sorry I can't play today, sorry you know how mommy's tummy hurts, sorry I wish I could do more.... you get the point right? I feel like I have been a horrible mother but I know that isn't the case. I just wish I could do a do over and not have Endometriosis and do all the things I always wanted to do with my daughter. 

As the days go by my daughter has become more self sufficient and it has made it easier on me because she can take care of herself, but it doesn't take away the guilt of not being able to give 110% to her. 

This disease has had it's challenges and looking back on it all and looking at my daughter I realize that I did a good job under all the circumstances. She talks about Endo to people and she empathizes when I am in pain and wants to help me. She believes me when I say I am in pain... I really think she was the first one to actually believe the pain of this disease before anyone else because she had to live with me every single day and see everything I did just to survive and I am still unsure if that is a good or bad thing at this time. I suppose time will only tell.  

I can say one thing for sure... I wouldn't be who I am without her or Endometriosis.