Monday, December 23, 2013

The time is now.

So after a long exhausting year with two denials for out of country surgery beneath me I have opened up a gofundme account hoping to raise money for surgery at the CEC. I really can't see me coming up with $12,000 doing it this way but you never know what can happen so I thought now is the time.

I live in a Country where health care is free but what you get what you pay for and it has shown of the last 23 yrs of my life. If you have a straight forward disease you most likely will get the care you need however with a disease like this when we lack the surgeons and tools to even operate you will never get what you need.

I am ashamed to even ask people for money, in fact I thought of doing this earlier but decided against it since I can barely take money from people to begin with let alone a whopping $12,000. UGH!

What has this country come to where you get denied the care that you should deserve and have paid into your entire working career. It makes no sense to me at all. I have emailed my local MP twice, contacted 2 papers and one news network as well as emailing the Ministry of Health to see if something can be done but also to educate on the problem not only this country has with this disease but worldwide. In turn I got zero responses. Its enough to even have a taboo disease like Endometriosis but even worse when you try to explain to people about this gynecological disease. Women in this world are suffering and they have done nothing to help in any way, instead we get doctors who either push heavy drugs or some that don't think the pain is real enough to give you anything. God they treat animals better than us females its sad.

I have no surgeon and my GP knows nothing about Endometriosis. Depression has set in but comes and goes as I try to think positive about it. I can't live in the past of what the medical field has done to me psychologically but I need to push forward to have another surgery done. Even if my pride tells me I shouldn't ask for money. What is someone supposed to do when they have no options left? Any of the other good surgeons which are not even close as being the best like my first one are not accepting any new patients and the ones that are lack the tools and skill to do excision surgery.

It is really scary since my daughter might end up one day with this disease and change needs to come and it needs to come now.

If anyone is interested in donating please feel free but please don't feel obligated to do so.

Wednesday, December 18, 2013

The never ending feeling of fatigue #Endo #Fibro #spoonie

The fatigue cycle for me has gone on since I was 16 yrs old about a year before I was diagnosed with Chronic Fatigue Syndrome, Fibromyalgia and Chronic Pain at 17 and Endo at 27. When people say they are tired to me I usually just ignore them because the extent of tired I feel is no where measured to someone who does not live in Chronic pain or suffer from CFS. The best way it has been described is feeling like you have been run over by a Mac truck and to be honest it does as well as over and over and over again.

When I wake up I am groggy usually from whatever med has been prescribed for me to use. When I am not on meds I don't have the groggy feeling just more of the extreme exhaustion. I had a sleep test done in the 90's and was told I have Restless Leg Syndrome as well as I don't enter a REM sleep stage. It has gotten worse over the years especially when I am on certain medications when it gets really bad I want to cut off my legs. The one thing I have tried is wearing baseball socks, it seems to calm down the nerves to some degree to at least yet me sleep. A couple of meds that make the RLS worse that I have tried is Gravol, Lorazepam, Cymbalta, and any kind of pain med like Percocet and some times my Jaw muscle relaxant Flexeril.

I often think that I do many messed up things in my sleep. I often think of recording myself because I have done things in my sleep like, sleep walking, talking as well as even taking a cast off in my sleep and putting in the bathroom.

Throughout the day I am exhausted and all I think about is going home to bed, but like any mother that just can't be done. Dinner has to be made, homework done, and spending time with the family this makes it really difficult for someone with Chronic Fatigue because you start to get very irritable, short term memory loss, and emotional outbursts. When its finally time for me to go to bed around 9-10 I am wide awake... UGH. This cycle drives me crazy, and I usually can't fall asleep until like 1-2 am so at the end of the day I am barely getting 5 hrs sleep a night.

I went through 5 yrs of really bad insomnia when I was first diagnosed with Fibro. I could not sleep for the life of me. I would finally doze off at 5 am and have to be up at 6:30 to be at work for 7 am. I would not take those days back for anything. I was lacking so much sleep I became depressed and suicidal. During those years I was under a lot of stress with the job I my mind would not shut of at all. I would replay anything and everything that happened during the day and there was no way to stop it and all doctors wanted to do was push me Antidepressants.

I am lucky now that I don't have those thoughts but I have a very high stress job which I am barely able to cope with which makes all my conditions worse. Pain from Endo such as bowel, bladder and pelvic pain keep me up most nights as well as the nerves all over my body that seem to be inflamed on a daily basis. No position I sleep in is comfortable. I have tried a new bed, pillows etc and nothing. My circulation cuts off on every angle and that is where the struggle comes in when I am trying to just get to sleep. Not to mention when I finally get to that point my IC kicks in and I have to constantly get out of bed to pee and start over... Someone shoot me.

It is a week before Christmas and I am so done mentally, physically and emotionally. I feel like I am on the verge of a nervous breakdown and nothing I do is helping at all. I come home now to read or watch TV.

I was told that drinking wine is better than taking meds and for the most part I have done this but lately it is really messing up my sleep. I wake up every hour on the hour if I drink wine and that is just not working for me.

I am not sure how much longer I am going to be able to cope as I debate every single morning when I am forced to wake up to even bother going to work, but reality is that I have to, there is no other way around it. I don't work for a company that I can take short term disability to see if this helps because I will be shunned and treated like crap so its better for me to suffer and hide what I go through because I need my job.

All I want to do is sleep I am in a state of tired that I don't think I will ever ever get out of. I have absolutely no energy to do anything. The only people that really understand are the ones that experience this sort of Chronic Fatigue.

Thursday, December 12, 2013

My mind #depression

Lost in my own world. #Depression #Chronicpain

It always seems that around this time of year I fall into a depression so deep that it is so hard to get out. It could be SAD but I know I struggle through out the entire year. I think in the summer I am more occupied and my mind does not sit idle but I do not like winter/cold at all so I am inside most of the time so I guess that is why it seems to be worse around the last 3 months of the year.

I have really learned to cope with Depression when I feel it coming on throughout the year, I trick my mind which took a very long time to learn and I wish I had learned how to do it sooner. As soon as I feel depressed I started tweeting funny pictures to help other people in their struggles then in turn it helps me not focus on what is happening in my own mind.

The last month I have gotten so deep that I am afraid but I do not want to take medications, they just don't work for me and I have tried many.

My eating disorder has gotten so out of hand but it is the only thing that makes me feel better. It stops me from thinking and it stops the pain from Endometriosis. Nothing makes me happy and I have always felt that way. If I become happy about something, something bad happens. I know that sounds just so ridiculous but that is how it has been in my life. I wish that I could find some joy but it is like I was not born with it. I have to really force myself to be happy and it helps but deep inside I just feel lost in my own world. I don't get close to people and I like to be by myself. I do like my own company a lot, maybe too much?

I am not much to go out and socialize and when plans get cancelled deep inside I am happy.

I have lived with Chronic pain as long as I can remember. I have known nothing but pain, physically, sexually, mentally and emotionally. Life sucks yet I am afraid to die. I just want to live with out pain and mental illness. I really don't know what came first but I always remember not really being happy or content with anything. How fair is that for someone to live like this? Depression you can't just snap out no matter how hard you try. I am convinced that I am wired completely different than other people. I am not normal but I guess, what is normal? No one is I suppose.

It has been hard even being a parent to my daughter. I know there are Endosisters out that that can't conceive and it kills me that I did and that I can't cope. I have no idea how I even made it this far being a mother because mentally and physically I can barely manage to get out of bed and my mind is all over the place all the time. If my daughter ends up with Endometriosis or any form of Chronic illness I don't know what I would do. I literally don't think I would be able to manage the both of us.

I am hoping that in 2014 I will be free from all of this, but I have to accept reality that this is who I am and I need to accept this is person I will be for the rest of my life. I can't seem to want to accept that, as there is always a fire and hope that one day the pain will end. I have clung to that hope for 23 yrs and I can't see me doing this another 23.

Thursday, December 5, 2013

My Battle With Food

As long as I can remember I have had a love hate relationship with food. As a baby I would vomit everything up or I could feel it coming back up all the time with certain foods. I ended up with an emergency laparotomy at age 7 for intestinal volvulus, my small intestine started to grow inside the large one taking out my appendix was the only option along with a bowel resection.

When I was 15 I developed an eating disorder. I wouldn't say this phase lasted long (anorexia) but I know when I was getting my period the pain was so bad for at least 10 days I didn't/couldn't eat. I was around 110 lbs most of my teenage years. People would always comment on how skinny I was and I would just stop eating just like that. I never thought about it to be honest until later when Endo started to effect my bowels. The rectal pain was so bad I could not stand it. I started to hate food because food meant rectal pain. I had so many tests done and they could find nothing.

I started to gain weight during my pregnancy. At that time I was 23 yrs old and I had only eaten once a day before this so I started to eat more because I had to for my baby. Well I gained 75 lbs. It wasn't something I was aiming to do of course but I was already battling with Fibromyalgia and was in an abusive relationship so food is what I turned to.

By the time my daughter was 2 or 3 I had gone full out Binging and purging every single day.

During this time I was so sick with Endo but had not be diagnosed, I was nauseated all the time, I had migraines that would last well over 48 hours with the longest being 100+. I felt so sick and the pelvic pain was way to much to bare. During this time I did a colon cleanse as nothing seemed to work at all for the bloating and the bowel/rectal pain this was almost like it was something that was meant to happen because if I had not done that cleanse and suffered so much pain that the 10 cm Endometrioma would never have been caught.

I did find out I had stage IV Endo in 2007, deeply infiltrating, Rectovaginal cyst, Sigmoid colon Mensentric cyst which is rare. My insides were glued together and I had kissing ovaries. I had a PSN (Presacral Neurectomy) done at the same time and the one main side effect? constipation. YAY!

So for me I have never known what it is like to eat without pain because I always have it.

Since that surgery I have had so many complications and have been addicted to enemas for the last 4 yrs. I can't stop. They make me feel better when I am bloated or can't go it is just something I do. I hate myself for it because at first it was because of the pain now its both and now I don't want to stop. Nothing will ever stop the bowel pain I get. No surgery, nothing. My bowels from day one have not liked me. Endo sure as hell didn't help with that.

I was diagnosed with a Wheat, Dairy and Spelt intolerance and I know these effect my bowels a lot but when you are bulimic and you are on all these meds that make you want to eat anything and everything there is no way to stop yourself. I feel like I want nothing but whats bad for me and when I try to eat healthier things I start gagging literally. I am sure its because I have been on and off so many diets to help the endo and the though of some foods like lettuce makes me want to be sick. I will force myself to eat it but I do not like it at all. It is not like I don't like healthy food, but for me stress, endo and meds trigger such bad things and I feel like there is no control whatsoever on my part, I just can't stop.

I am 36 yrs old with an eating disorder that shows no chance of ever stopping. I have lived this cycle for so long that I wonder why I was chosen to suffer so greatly from birth. Why is my body so fucked up? Every inch of my body there is one problem or another and I want to scream my face off.

Well I haven't posted in a while and I will call today Confession Thursday lol.