Getting me back

I am just going to say it.... depression sucks. I literally didn't want to get out of bed yesterday and called out of work because my entire brain and body was just shut off to everything. I can count on my hands the times I've been depressed and it normally happens after surgery when my hormones are acting up and trying to get themselves in check. I just feel like I am drowning in every aspect of my life. I've been working alone for almost a year and I have being doing the job of two people and it gets very overwhelming at times so there is that small part. Then financially I wasn't expecting all of these added medical bills for things that my health insurance didn't deem necessary. Financially I make it by I do my best and yes there is overtime at work bla bla but it's hard to work like a maniac when your body is exhausted after putting in the 40 hours already. That is one thing people don't understand. I had someone say well I have IBS and this and that. Okay understood. But have you ever heard about a disease that takes over you body and everyday it's fighting itself and you are just trying to function with no clear end in sight?? didn't think so. I bet if I let a few of them borrow my body for a few days they wouldn't complain about their minor issues. Yes I am being a bitch but it gets exhausting trying to explain it when people couldn't give a shit.

I am also trying to balance all of this with having a boyfriend that I love beyond words. I don't like to verbally complain because I know that he works 10x harder than me and he doesn't complain he just goes about his day. And I want to be that rock for him and put my issues aside. The distance kills me thats for sure but he really is that calm to all the chaos that my life is going through right now. I think my issue is I try too much and I try to make everything be perfect when I should let things fall into place. I also am so damn impatient. I will say that waking up and knowing I have him in my life does make going through this a little better, also my friends. My two very very best friends that have talked me off several ledges so many times that I can count. I may have two friends that are there when I need them granted they live far as hell, but the keep me laughing. I just wish I could take a mental time out from life for like a week in Cabo.....I know the old me will be back and that this is only temporary but for fuck sake I need a new damn body.

If I could turn back time

If I could go back in time to my younger self right around the time I was 11/12 when I had no idea what was happening to my body, I would not just brush it off. I think that if I was that age now, that there would be more resources for me to turn to when facing Endometriosis. There are still so many misconceptions and "false advertisement" to be honest but I think I would've been in a better situation in this day and age. I always think about the what if's like what if I had excision to start with, instead of the only option at the time which was ablation. I wonder if maybe there could've been a possibility to have my own children. I also wonder if I would've been happily married or still shopping for size 12 jeans and being a crazy yoga and spin addict. I also wonder if I would be in such debt because of these uncovered medical costs and being out of work without pay. These are things that I think about in the back of my mind sometimes. Again, I wouldn't change anything except the fact that I wish I knew about the proper standard of care sooner rather than later. I feel that awareness and education come hand in hand and this disease should have been advocated and discussed in certain environments like schools during health class, school nurses and even medical staff. It should've been on the news, social media, etc. Now you can't even go on Facebook with random adds popping up on your sidebar.

When I think about what I've gone through in the 20 plus years of ever knowing and having this disease, it is mind boggling. Not only what my body has gone through but my entire life and emotions, relationships, and everything in between. From physical abuse, mental abuse, to surgery after surgery. From doing everything from traveling to working out, to now running out of energy after taking a shower. Living in a body that is draining itself faster than an iPhone battery is exhausting yet I am still here. The reason for that is because I push through the daily pain and exhaustion and know that I can block it out mentally. I swear if it wasn't for my parents all of these years I would've given up on myself a long time ago. So yes, it's been one hell of a ride that still keeps on going with no end in sight. But I am still here showing up every day. It's important to still find that piece of yourself, the one that has always been there and let it shine even when you just want to give up. From then until now, I did what I could to just be me. I was never scared in any of those surgeries I just walked through the fire because I knew it was something I had to do. Maybe I'm a warrior or maybe I am just numb to it all. I also think it's because I would tell myself there are people out there fighting battles that are far more worse than mine so suck it up. And that's just what I do.

Yes it's exhausting to have your body give up on you but if I could go back to the younger version of me I would tell her to just keep pushing through, it's okay to cry and it's okay to breakdown but never give up because once you give up, you surrender everything that you've ever fought for.

Post Op Life

I never got to update on how post op went. Apparently there was miscommunication between my Doctor relaying information to my Mom after surgery. When I sat down at post op I sarcastically said well how come you didn't unstick me? He basically looked confused. So what was found was my right ovary was stuck to my sigmoid colon. He was able to unstick it thankfully and there was a spot he cut out in that area too. He then didn't want that issue happening with the left ovary so he tried to suture it out of the way and when he did I went into Bradycardia, he then released the ovary back down and tried to do it again and the same happened so he was unable to move it out of the way.

So let me kind of break it down because many just think that I am now healed because everything isn't stuck together. I am not healed. There is NO cure for Endometriosis. Because it took me 10 years to be diagnosed, plus two ablation surgeries which messed me up in the long run, my body will never function like a normal body. I used to be able to eat whatever the hell I wanted, now I can't. I have to write down what I eat everyday and figure out what triggers me and what doesn't. I went from being skinny to blowing up like a tick. Then there is the awesome brain fog and constant fatigue. So unfortunately this isn't a cure all but I am lucky and fortunate to have found the right surgeon.

So now that all of that is put to rest because I am tired of repeating myself for the last 15 years, I have to say I am grateful for the very small amount of people I have standing by me. I literally don't know what I'd do without my parents. And, well funny thing happened when I was recovering. I won't get into the super details but I met someone. I will say that I have been praying for someone like him. He was there for me during my entire recovery and I am grateful for that. He also took the time out to research Endo and no one has ever done that. So I guess I will keep him around. But I will say that having him in my life made my recovery easier. So there's that added bonus to my life.

Surgery & Such

So I am a two weeks post op from my 6th surgery. I'd like to say it was successful but unfortunately it wasn't. While he was peeking around it was found that my left ovary was and is stuck to my bowel. Probably why I am all screwed up GI wise. When he tried to lift up the ovary, my blood pressure and heart rate would drop, so he put it down and tried again and the same happened. So for right now that is still stuck. He did do excision in my sigmoid colon, and I am sure I will find out the rest friday at post-op. I feel defeated and broken to say the least. I get the reason why he couldn't cut out the ovary but why not? It's not like I can have children and this is causing so many issues. So who knows cause I don't. This disease is draining and I am mentally drained. Physically too, the healing process is a lot rougher then what I remember at prior surgeries. My pain is pretty severe and sleeping just isn't happening. Also being alone and cooped up in the house pretty sucks.

Mentally I feel defeated because I thought that this would be it and I would have my pain managed but yet here I am because I thought I could keep pushing my surgery because here I was putting everything but myself first. I literally am so so tired of this disease and so frustrated that this will never be the end. I am not sure how many more surgeries I can take. This is the real face of endometriosis, the frustration and the fears and the unknown. When you are faced with fighting again you grow tired. I guess there is not much I can do but adjust my sails and keep going as hard as it is. I know this will never be my last surgery and I need to just enjoy life while I can no matter how much pain I am in. Sometimes you have to reach inside yourself when you are defeated and broken and find the will to keep going.  Guess I will find out this week when post op happens.

Pre Op

I’m mentally preparing myself for 13 hours today and 16 hours tomorrow, all while not being on medication because surgery is on Wednesday so I’m just a basket full of endometriosis right now.

My pre op lasted 30 minutes And I asked the doctor am I crazy? Because I’ve had two ablation surgeries back in my 20s and I’m wondering if that made me screwed up in the long run.  What he basically said was by them burning the Endo it made it easier for scar tissue to build up, so basically the insides of my body are being cemented together. So now he has to go in and work through all that scar tissue then cut out the endo and unstick my organs. When he said that, my entire soul was crushed.  I can’t go back and think of the what if’s  because there was nobody to blame but those doctors that were poorly trained in the proper diagnosis of endometriosis. I am super scared of what’s going to happen because all I’m imagining is somebody taking a drill to my insides because of it being cemented together. I haven’t slept and I’m just so ready for the healing to begin. I can’t wait to just focus on me for a bit. I’ve been too busy worrying about relationships and everyone else’s problems that it’s time to focus on me.

Cue the anxiety

I am totally supposed to be sleeping because I have a double, but I just got the confirmation call from Kip's office about surgery and now the anxiety is kicking in. Evey endo chick can agree that going from surgery to surgery you still get that worry about will they find something or maybe this is the way my body is supposed to be.

We have been told by dismissive doctors that it's all in our heads and this pain is normal that you become destined to think this way. It is sad to be honest. I know now that those doctors were idiots and shouldn't be practicing medicine, but I know that I have a doctor I do trust. I am about 3 ish weeks away still a long time but, it's crazy to see how my pain and symptoms have gotten worse. I went from having good days where I can function no issue, eat whatever, and spin my little legs off to now being nauseous and shoving food down my throat. I am trying the whole shake thing because this girl needs to eat. We are still short at work so when I do work doubles my body goes into flare mode. I am patiently awaiting the flare to happen and it's hard to explain to male coworkers that I can't 'crush' overtime, because I can barely make it through 8 hours with out getting sick.

That's the one thing though that I handle pretty well, it's pushing myself. I work hard and I don't seek pity from anyone..

that is all

-A

When you need to set the record straight

It is hard to try to explain endometriosis to people because I would rather say oh I have a migraine or I have pneumonia, because those things are so common it's easier to understand. Also, if you want to try and understand then ask me. Don't base judgement or assumptions on someone with endometriosis because you think they will just get over it or take a pill. I also don't want pity or sympathy. Trying to tell people that I am having surgery and they say I am sorry, that isn't going to make it better. Us endo chicks get tired of apologies because that's not what we are looking for. We aren't looking for attention just understanding. I tell people think of endo like having the flu every single day. Yes we have our good days and our bad days. There is no magic pill or potion, and there is no cure. Another thing I have gotten is, well you had a hysterectomy so I don't understand why you are in pain because I had one and I don't have pain and I am healed, or why do you have to have another surgery if you had a hysterectomy.

Let me draw this out for you a bit. The reason for my hysterectomy is because I had suspected Adenomyosis which is endometriosis inside or surrounding the uterus. When I had my hysterectomy I had to have my cervix out as well due to cancerous cells within the cervix, so double whammy. Pathology report came back with focal Adenomyosis, which meant they did not have to dissect my uterus, it was right there when they were testing it. That was the reason I had to have a hysterectomy because periods were making my pain worse and my uterus was the issue. Just because I no longer have those two vital organs, doesn't mean I am healed. Again there is no cure.

The reason I have to have yet another surgery is because my first two surgeries were ablation, what that means was the doctor thought they knew what they were doing and they burned the endo or just probably burned what they thought was endo, so they screwed me up. If endometriosis was actually a common thing back in my early 20's and I the doctors knew about excision (cutting out the endo) then I wouldn't be where I am today.

The biggest issue right now is eating and getting sick. You would actually think that I would have lost 100 lbs from all the vomiting and everything else I face on a daily basis. It doesn't matter what I eat, something triggers me and I get sick. I basically live on zofran and Imodium right now, that's why I get irritated when someone says I have a stomach ache then feels better the next day. It's to the point now where I get freaked out leaving the house or actually going and doing something fun because I know that I can only be out for a little while before I get sick. Stress makes it worse so doing the job of two people at work isn't helping and the days I so desperately want to call out sick, I can't. I have to just slap on a smile and go about my business and pray my relief doesn't show up late, which always happens.

I know this sounds like a giant me complaining rant, but it gets very tiring listening to what people say behind my back and not having someone actually ask. I did not pick having an incurable disease out of a hat. I was born this way and I deal with it pretty well. That is why I am constantly posting articles on social media because my one article or one blog post, reaches someone that may be wondering why they are having such pain or why doctors aren't listening to them. I would not want someone to go through years of misdiagnosing and incorrect surgeries, because painful periods and pain in general is not normal. I was told from when I was 13 that it was just a bad period. Flash forward to 34. Where I don't get a period and I am still in pain. That is not normal. I am fortunate to have such a good team of doctors as well as a few select friends that do their best to understand.

I am literally a month away from my 6th surgery. I've always been pretty zen the last 5 but this one I am scared to death. When endo reaches yet another vital part of your body (intestines and colon) you don't know what the doctor will find and you don't know if you are going to have a bag for the rest of your life. So to say that I am zen is a lie. I have such anxiety and worry that it is messing with my head for sure....

So I had to set the record straight because I don't need negative vibes in my life.