A Letter to the Girl I Used to Be

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When I decided to base this next blog post around the girl I was before my diagnosis, I tried thinking back to what I was like before. And honestly- I am having a really hard time remembering this person. I really don’t remember the last time I wasn’t in daily pain.

I remember when the pain wasn’t so severe- where it was there but I could take some medicine (advil, Tylenol) and it would be ignoreable and I could go about my life. I remember when I didn’t have chronic fatigue to the point of being so tired as soon as I wake up, making it easier to be someone who was able to do things. I remember when it effected my life, but not THIS BAD.

Roughly four years ago, the pain became chronic. Chronic and bad, but not as bad as the past year or so. Even through this chronic pain- I was a typical 20 year old. I was happy- I had just overcame a severe eating disorder and depression (that will be another blog post) and I was living life to the fullest.

Coming out of the darkest times of my life, I made it my mission to be full of life: img_4304.jpglast surgery all alone- prep, bathing me, changing me, everything. Some girls won’t even pick up their birth control at the pharmacy with their dad and here this is all we talk about.

The biggest thing I wish I knew was how to be more understanding.  The biggest thing this endo journey has taught me was that you never know what someone is going through. Everyday I try to have a smile on my face and be warm and caring, while inside I am in so much pain and struggling- I try to remember this about other people as well. That we have no idea what someone is going through on the inside just by looking at their outer appearance. I wish I would’ve been more understanding and compassionate to other people with chronic pain and a chronic illness because it truly isn’t something you understand till you’re going through it yourself.

Lastly, to the grew I used to be…thank you. Thank you for learning early on how to be so strong and preservere through tough times. Because without this, I have nothing. Without hope and strength, I have nothing.

I apologize for how all over the place this blog post was- but that’s just how my endo brain works- foggy and cloudy. Once again thank you so so much for reading my blog and please reach out!

 

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If you would just listen…

As I was speaking to someone at work tonight ( I work in a hospital) about my history and struggle with endo, she looked at me with tears in her eyes and said ‘you are so incredibly strong and yet you are so sweet for everything you go through on a daily basis.’ She also asked me how I don’t consistently ask ‘why this happened to me.’
Throughout our discussion, I realized I kept talking about what  I wish people knew. Tonight, I thought I would do a blog post about what I am sick of hearing concerning my endo, but I figured I would switch it up and instead ‘what  I wish people knew/what I want them to know.’
It seems no matter how much I talk about endo, share articles on facebook, spread awareness, etc people just still either have no idea what it is or are completely uneducated about it. From thinking surgery is a cure, to that pain is only during my period, to that it is no big deal- the list goes on and on.
I have narrowed down a variety of things I just WISH people knew. Things I think of daily that I wish people realized I go through. Things that I wish people could understand and step in my shoes for a day- because then maybe we could find a cure.

1 . Please stop asking me if I feel better: One of the reasons I named this blog, ‘This is My Normal’ is because my  ‘normal’ health is not the same as someone without endo. I have always said that I should have a different pain scale than the 0-10 because everyday I am around a 6-7, so it is hard to say that my 7 is the same as someone who doesn’t have chronic pain. To be honest, I have no idea what to say when someone asks me ‘how are you feeling today or are you feeling better?’ Granted- I try to keep in mind I should be thankful they care enough to ask.  But if  I say I feel better I would be lying, but if I gave you the true answer- you’d call me whiney. Yes, some days my pain is worse than other days, but I have severe pain everyday. So if  I feel ‘better’ or ‘good’ it means my pain is still there, but it just isn’t the worse I have ever had it. Also, I have chronic fatigue- I can sleep for 12 hours and still be exhausted. Don’t ask me if I need to take a nap to feel better. Endo also suppresses my immune system- my body is consistently attacking itself which results in an immune system deficiency. This means I catch anything and everything going around to the max- a simple cold can knock me out for 10x longer than a normal cold because of how shitty my immune system is from endo.

2. Being in pain is exhausting: When  I say I am tired, it doesn’t usually mean oh I only slept 5 hours last night I am sleepy. It either  means 1. I was restless from pain all night, barely slept and now I am in even more pain or 2. I slept for 12 hours and I am in so much pain today that I am exhausted from it. If you have ever had a sore back, pulled muscle, headache, sore throat, etc. you know how tiresome being in pain can make you. Now imagine that times 10 and everyday- most days I want to fall asleep standing up (however then I have insomnia from pain and don’t sleep) Most days my joints and body ache from being so run down and tired. Chronic fatigue means no matter how much I sleep or what I do during the day, my body is always exhausted. Being constantly tired effects everything (some I will discuss later): from my emotions being wacky, me being grumpy, not being able to be social like I want to, my focus being all over the place, etc. I have what I call painsomnia- being exhausted from being in pain, but in so much pain I can’t sleep .

3. My life is affected every day in a new way: I may have had this disease for 8 years now, but everyday I learn a new way that endo has affected my life. Most people know the basics: fertility issues, pain, hormone issues, etc. But it is the small things that hurt the most and the things people don’t think of when they hear endometrisois. These little things are the things that I cry for hours about because I get frustrated endo has affected my life in big ways like my relationships to small things like my hair. For instance, I have always been one to constantly change my hair color and have nice nails, and I have always struggled with my skin. Come to find out- all the meds have destroyed my hair to where it can’t be long and it can’t be bleached, only short and dark. My nails are brittle and break easily because of the beds and my skin SUCKS from all the meds.

4. It’s not just a bad period: If I had a penny  for every time someone said to me ‘oh yeah  I get cramps too I know how you feel’ or ‘oh maybe I have that too my periods are bad.’ periods are not pleasant for anyone. I am not disregarding your pain but every time you say to me that you think you have endo because your cramps aren’t ‘fun’ is degrading and belittling to me. Not only are you dismissing my pain, but you are spreading false knowledge and education about endo to others. I have pain every. single. day. not once a month for a week- except during that week it is 1000000x worse. oh and if your doctor thinks you have endo- do your research before you start spreading awareness if you are going to try to help spread knowledge, please make sure it is accurate and right.

5. My emotions are a roller coaster: Between all the hormones I am on, the fluctuation of my hormones, my already existing struggles with mental illness, the whole ‘not having a cure thing,’ the list could go on and on as to why some days I am just fucking grumpy. I am tired, in pain, my brain is foggy (endo brain) and I just want my heating pad. I hate life. I am miserable. Yes I am grumpy. Or- everything is making me cry- from happy tears, to frustrated tears, to mad tears I cry a lot. And yes this all can change within minutes.

6. I don’t look sick: I take great pride in the fact that people always say to me ‘well you can’t feel that bad you look good.’ As annoying as it is to hear, it is reassuring to know that  I don’t look as shitty as I feel. Trust me, if I wanted to look as bad as I feel I could, but I don’t want to. I want to seem strong and put together– when inside my body is falling apart. I have always been that way whether it is with physical or mental health- I wanted to seem completely put together and stable, even when I was totally a mess and everything but stable. Also, I have chronic fatigue so I probably do look exhausted all.the.time.

7. It’s all I may talk about: It takes me quite a while to feel comfortable enough with someone to talk about my endo. Granted this probably comes from the amount of ‘friends’ I have lost because they told me ‘I complain too much about my endo’ or ‘talk about it too much.’ So yes- now I just don’t talk about it or bring it up. But- when I do feel comfortable with someone- I talk about it ALOT. I hold it in so much that then its like word vomit when it comes out. But I instantly feel closer and have a stronger friendship with those that are willing to listen, be there, and try to understand.

8: Nothing means more than when people say they want to learn about endo: Spreading awareness and knowledge about endo is one of my biggest passions however the moment someone decides to look up endo and do research themselves, my heart gets so warm inside. When someone tells me they just looked it up or want to learn more, I get the same feeling as when someone buys you flowers. I think it is amazing that someone is spending their free time to learn about my condition. The more people learn, the more awareness can be spread. Also, it shows you want to learn more about me, since it is such a big part of my life.

9. Stop asking me if  I want kids: Every single day someone asks me if I want kids. Of course I want kids. However, I was told at the age of 13 I was probably not going to have my own kids. And to be honest, between my moms struggles with getting pregnant and having me and the fact I don’t want a girl to give this to, I want to adopt. And yes, I know I have to find someone who agrees with that and yes I struggle with the fact I will probably never have my own kids but for the love of god we don’t need to talk about it everyday. And no- I am not pregnant. And yes, I am super bloated. My uterus is so swollen it is the size of someone who is 12 weeks pregnant.

10. There is no treatment, cure, fix, etc.: please stop telling me to take advil or pain killers, please stop telling me to keep trying lupron, please stop telling me to ‘just have another lap to get it all cleaned up’ JUST STOP TELLING ME HOW TO FIX AND CURE MY ENDO. IT. CANNOT. BE. CURED. there is no treatment!!!! any ‘treatment’ is just a band aid. Hormone therapy can slow down the spreading, laparoscopic surgery can ‘clean up’ some lesions, but not erase them, lupron can slow it all down as well. THERE. IS. NOTHING. I. CAN. TAKE. TO. MAKE. IT. END. and most of these medicines have terrible sides effects that are a million times worse: scar tissues, depression, hot flashes, nausea, etc.

  • Lastly- you have no idea ever. ever. ever. what someone is going through.  I keep in mind that I don’t look sick- you would have no idea that amount of pain I am going through on a daily basis just by looking at me or briefly talking to me. You would have no idea the amount of hurt and sadness happening inside. So when I lash out or get grumpy, I blame it on this disease. When someone is rude or mean to me, I try to remember that I don’t know what they are going through. I truly know I am not the only one with a chronic illness, but I truly wish more people could respect the fact that I do things on a daily basis that they wouldn’t last one hour doing in the amount of pain I am in. I am not asking for a reward or award but respect- respect the fact that if I wanted to be on disability I could be. Respect the fact that I really do want to make plans and have fun with people, however my body is so, so tired and I am in so so much pain.

I want to be normal. I really do. It’s just getting harder and harder by the day though.

 

Once again- thank you for taking the time to read this. Also- please please don’t hesitate to reach out with comments, questions, or things you want me to discuss.

My next post will probably be about my journey with mental health or just some more ranting- who knows what the next few days will bring!

Some Lessons My Endo Has Taught Me

As stated in my last blog,  I have a few ideas for upcoming blogs and I went into today thinking this post would either be about the medications I have tried, my mental health journey or ‘things I am sick of hearing concerning my endo.’ However, I realized most of my recent blogs were fairly negative and complainy so  I thought I would do a more positive vibe one.

If I were to count the amount of times per day I bitch about having endo, I would probably hate myself too, just like all the friends or boyfriends I have lost alonimg_3879.jpgg the way have said.

I recently have realized that my perspective on alot is different than most peoples because of my endo. Once I started thinking about all the ways my endo has changed me, I realized it has taught me alot more than just how to bitch and whine.

Sure, it taught me how expensive and aggravating doctor’s visits can be,  how long it takes to recovery from surgery, and the importance of a heating pad, but it has also taught me alot of good things. I have attempted to compile a list, in no particular order because I couldn’t decide.

And to be honest, this post took me forever because I realized I’m learning something new about myself, the world, and others everyday and that is what I love about life.

 

  1. Live everyday in the moment: recently I really struggled when I realized how much my everyday life has changed pre- chronic pain . I used to be the spontaneous, carefree, party girl and now I am attached to pain meds and a heating pad. My mom almost had to cancel a trip to the beach because she was worried I would be in too much pain to enjoy myself. I make plans, then have to cancel because I am in too much pain or too tired. If I could go back pre- chronic pain I wish I would’ve been more grateful and really have taken advantage of this ability. I also am trying to work on not letting my endo slow me down– which is hard when it literally makes me bed bound. I also learned not to push myself because then the next days are killer. But I’m trying- trying to not let this rule my life.
  2. What I want in a significant other:  I can honestly say I learned the hard way how much endo will affect every single relationship, but especially romantic ones. Sex is a big part of relationships and how do you tell someone you can’t because it makes you cry when you try from the pain? How do you tell someone most days you can’t get out of bed let alone go on a date? Or kids- hey my name is Stacy and I probably will never have my own kids. I’ve been broken up with from telling someone about my endo right away, as well as months into the relationship. I can’t win. I have also changed alot of my standards. At the top of the list is now patience, understanding, supportive and strong. Because I need to rely on someone when I am weak for support. For more of my history with endo and dating please check out this blog post…. https://kickingendosbutt.wordpress.com/2016/06/01/lets-talk-about-sex-baby/
  3. How strong my mom is: endometriosis is an incredibly hereditary disease, if one generation of females has it, it will most likely be passed down. I was told at the age of 10 that because of how bad my mom’s was I was 99% going to have it. My mom’s endo was as bad, if not worse than mine. Knowing what I go through everyday and knowing health care has at least progressed a little (sometimes I think differently) I fully know what my mom has dealt with her life. Not only did she deal with what I am, but she also has had the struggle of  multiple miscarriages and going through IVF because of many failed pregnancies. She has also had to watch me go through the same thing, and every day she blames herself for my struggles. She has to relieve her struggles every day through mine, misses work for my appointments, her appointments, and is my number one advocate. I can only hope to one day be a mom, let alone half the mom she has been.
  4. How to be open with my dad: I will never forget picking up my birth control at the pharmacy once with my dad and the pharmacist checking me out literally said ‘oh how awakrd picking up your birth control with your dad’ and my dad literally was speechless. So many people tell me how they get embarrassed discussing periods, sex, anything female related with their dad- my dad has been to my appointments, did a surgery recovery once BY MYSELF without my mom (surgery, talking to my doctor, helping me bathe after, meds, changing my clothes). My parents know everything they have to. There is nothing off limits in this family to discuss yes I know it isn’t normal to talk about ovaries and periods at the dinner table. It’s just the way it has to be.
  5. The importance of being open: Whether this means with a significant other, friends, work ,etc I have learned that when I try to hide something that affects my life in such a great way it only makes matters more complicated. Like I said earlier I am still trying to learn when the best time to tell people is, but I truly believe that it is better to tell them than to hide it. This also has shown me the importance of the ‘hard talks’ such as sex, future kid plans, and mental health.
  6. Stick up for yourself: I have seen over 13 doctors and spent over 7 years trying to get a diagnosis. I was told it was in my head, I was being dramatic, I was exaggeration, my pain wasn’t real, etc. I knew something was wrong,  I knew this wasn’t okay, and I wasn’t going to let a doctor push me around and think it was okay to put me down. If I wouldn’t have continuously stuck up for myself, I would probably be dead. I have also learned the importance of sticking up for myself to ‘friends’ who told me to just take pain meds and come out, or left my life because they ‘didn’t want to hear me complain’ honestly  I defended myself but at the end of the day. Screw y’all.
  7. I am more than a diagnosis: Recently, I have been telling more and more people about my endo. One of the doctors I work with looked me in the eye after  I told him my story and he had tears in his eyes and told me ‘I am so impressed with you. I don’t know how you do it and I wouldn’t never known you were going through this on a daily basis.’ This made me cry my eyes out- I try so hard to push aside the pain and live a normal life. I try to go through the day happy, spunky, energetic while inside my insides are on fire and I could fall asleep standing up. I truly am working on not letting my endo define me and rule , my life. But it is hard. So so hard.
  8. You never know what battle someone is fighting: I work in mental health so this wasn’t a totally new lesson for me, but rather one I am super passionate about. You literally never know what someone is going through when you see them. Like I said before, I’ve had numerous doctors tell me they would’ve never known I had such a severe chronic illness and I truly try to go through my day with this in mind. I know how much I function with such severe pain on top of my mental health issues, so who knows what this person next to me is going through . I know how grumpy I can get so I try to keep that in mind when someone may be grumpy with me. I have very very very bad days, and  I like respect especially on those days, so I try to be that for others.
  9. How hard it is to stop eating sugar:  When I found out I have severe nerve damage, my doctor recommended that I really change my diet since nerve damage isn’t fixable. I already don’t eat wheat because I am allergic, and I am technically lactose intolerant but I didn’t follow it. After my surgery I totally cut out all meat but organic, hormone free chicken, dairy products (expect yogurt), caffeine and processed sugar. I don’t really like meat, (even chicken I just eat it for the protein), so this was easy, the dairy was super hard at first, but they say once you get past two months you are good and I have been pretty good with it. I thought cheese and caffeine would be the hardest to give up, and I have gotten pretty good with it. Plus they are sooo many tasty ice cream substitutes. I also can have decaf and green tea, which has helped the coffee cravings. The first two weeks I had massive headaches though from caffeine withdrawal.  HOWEVER SUGAR. sugar sugar sugar. I work second shift so around 10:30 ish I swear sugar is screaming my name. From pb cups, chocolate, gummies, I don’t care its all I want. I didn’t realize how much I craved it till recently. I’ve tried to stick to all organic, dark chocolate and mix it with coconut chips  to try to cut the cravings it is working but not without a struggle
  10. I am enough: For those that don’t know my mental health journey be on the lookout for my blog post to come about that. However, if you do know – you know that I have struggled with anxiety, depression and a severe eating disorder for years. This all came from a lack of control of my life and not feeling ‘good enough.’ I still really struggle with feeling ‘good enough’ at times, but I am continually trying to work on it. However, my endo has really provided some setbacks for this journey. There are often times that because of my endo, I struggle with not feeling like a good enough friend, girlfriend, employee, daughter etc. I need to learn that I am doing the best I can and to not compare my life to others. But it is very hard for me to see people my age doing all these great, adventurous things, when I am stuck at home in bed. I know I am not a good friend at times (mainly bc I have lost almost anyone), I can be a sucky girlfriend (partly why I am single) and some days I can barely focus at work . But I am trying to move forward knowing that if I am doing my best, this is what is good enough.  I have also learned I am stronger than I ever knew. When I think about all the things I do on ‘ bad days’ I amaze myself. I do things on ‘bad days’ that people can’t do with a simple cold. But it is hard to feel strong and good enough most days.

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****Thank you thank you thank you for taking the time to read this. Especially on the posts that are more vulnerable and from the heart like this one, I really appreciate those that take the time to read them. Don’t forget to comment, share, and give me ideas on what you want to hear about****

Update and Welcome

As I have been writing my more recent blog posts, I realized how many people have entered my life in the last year who are just now learning about my blog- so I wanted to write a post with just a little background about me and my endo journey for those that are new to my life. (and an update for those who aren’t new)

****First, if you know nothing about endo, I encourage you to check out the page that covers all the specifics this will make no sense if you don’t****Screen Shot 2016-02-03 at 10.49.48 PM

Starting from the beginning

From the ages of 16-20 I saw 13 doctors trying to find a reason behind my fatigue and severe abdominal pain. I had lost over 50 pounds (more on that in another post) partly due to the agonizing, debilitating pain I constantly was in. I had 7 different tests done from a colonoscopy, multiple endoscopes, etc – blood work done every week for years, and nothing ever came back showing something was wrong. Numerous doctors refered me to psychiatrist telling me I was making it up for attention, I was exaggerating, being dramatic and it was all in my head.

THANK GOD for my mom , who has always been my biggest advocate. She herself has stage 4 endo, all in her lung (her lung would collapse every month), diaphragm, intestine, bladder, etc. She knew that all my symptoms were starting to look familiar and she would constantly push doctors to put me on meds that are the ‘band aids’ for endo.

I eventually saw an endocrinologist who mentioned that she felt surgery was the best option to open me up and see what was going on.  Well guess what- she found nothing as well. Told me I had a low pain tolerance and needed to ‘fix that myself.’

I then was recommended to my current doctor Dr. Harkins of Penn State Hershey and my first appointment with him changed my life. He held my hand while I cried, told me he was sorry for all my bad experiences with doctors, and reassured me he was here to help me. (I also told him about the doctor who forcefully did an internal ultrasound on me as I screamed stop youre hurting me and tears formed in his eyes).

After my first laparoscopy with him, I was diagnosed with stage four endo on my pelvic floor, bladder, and intestine,  interstital cystitis,  and fibromyalgia . He also said that because the last lap was done by someone who ‘didn’t have endo knowledge’ all it did was result in my endo spreading worse. 

Through the following two years, I tried everything from the terrible terrible drug Lupron- which is used for cancer – and nearly killed me (I’ll do another blog on all the meds  I have tried soon), Femara (used to treat breast cancer) and over 7 birth controls and pain meds.  I had also moved to the Outer Banks in North Carolina where it was nearly impossible to find a good doctor. Scratch that- it was impossible. I traveled all the way to Duke and he told me he didn’t know what to do because I was so complicated and severe. Gee . Thanks. 

I moved home in January and a big part of this was because my endo was so bad that my depression/anxiety were worse and I wanted to be closer to my doctor again.   **Let me just add that I wake up everyday knowing I am going to be in pain and that there is NO NOT ONE cure or treatment to this disease- just ‘band aids.’*** Within a few update visits, we decided a third laparscopy (second with him) was the best option to figure out the next plan for my pain.

After this laparoscopy I was also diagnosed with ( in addition to all the conditions from the last time), with a frozen pelvic floor, extensive nerve damage, and it was discovered that my uterus is the size of a 12 week pregnant uterus. WHICH EXPLAINS ALL MY  CONSISTANT BLOATING AND SWELLING—– 12 WEEKS!!!

After my surgery, I wanted to see how my body reacted to just a new IUD. However, during last month we learned that the endo has really affected my lung. During what would I have been my first period since surgery (I get ghost periods, so all the symptoms just no bleeding) my lung caused the worst pain I have ever felt-  I couldn’t walk up the stairs without being out breath, hold a conversation, and I felt like I was having a heart attack. It was discovered the IUD wasn’t strong enough to prevent this so I was prescribed another birth control pill. However, to this day my lung is BAD. I am on an anti inflammatory as well to try to ‘calm down’ some of the endo affecting my lung. This helps for about an hour.

I am also trying to find a new specialist that can help with this lung issue (my doctors plan isn’t working) because I can’t miss work every month for this like I did recently. **If anyone has anyyyyy specialist OB/GYN doctor recommendations from PA, NJ, NY please share!!!**

One day this week my lung was super bad and my mom’s reaction was “I’m sure it is” to which I just stared at her. She then said, “this will be your life now- once my lung was bad it always bad’

Great. One. More . Thing. Add. It. To. The . List. (this will also be another blog post-  all the ways my life has been affected)

Well, so much for my quick recap and update. I mentioned a few of my ideas for future posts, from my mental health journey, complete life updates, ways endo has affected my life, meds I have tried, etc HOWEVER I would LOVE LOVE LOVE ideas of what y’all want to hear about. I don’t want to just be complaining  all the time- and would love to know what yall want to know about the disease!

Lastly, the other day my blog had over 100 views. 100!!! THAT IS AMAZING. and absolutely astonishing. I started this blog as a way to rant, complain, and spread awareness not thinking anyone would even read it. I would love to know who is reading it and connect with others so feel free to let me know privately or leave comments on posts. lastly, THANK YOU THANK YOU – feel free to share my blog and posts- ENDO AWARENESS IS KEY

 

 

a picture is worth a thousand words.

Everyone has those pictures that instantly bring you back to that point in time, the emotions, memories, it all comes running back. While I have many of these, (mostly good), one of the hardest ones for me to look at is not a happy one.

Four months after my second laparoscopy (when I finally got my diagnosis) my pain came back full force and a million times stronger than ever. I went from having pain and cramping that was to be expected right after surgery to debilitating pain every single day. Pain that was worse than even BEFORE my first surgery.

I can tell you the date, place, time,  everything about this day. I was at Ocean City, NJ for the fourth of July with my mom- a trip we do every year. I didn’t sleep the night before because of the pain and was so miserable that day. That night at dinner she took the picture posted below- you can see how bad my bags are under my eyes, the look of sadness, and how miserable I was.  Little did I know that this wasn’t going away and this was my new life.

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Every time I see this picture my heart breaks a little more. When I see this picture all I see is sadness, and a loss of hope. I knew my life was changing and I felt defeated. I thought surgery had ‘fixed me’ and endo was just another chapter in my life story. Sitting at dinner with my mom, unable to eat because I was nauseous, she looked at me with tears in her eyes and said “I am so sorry I gave this to you and this is officially never going away.”  I also see the girl I used to be, the girl I so try to hold on to. Someone who could go out with her friends all day all night, the life of the party, someone who didn’t have take 6 bottles of pills everywhere she went, who could wear crop tops because her stomach didn’t have surgery scars everywhere, who didn’t envy every pregnant women she sees. I thought life was so hard back then, little did I know how hard it was going to get.

My mom took this picture without me knowing because she wanted to be able to look back some day and have me say ‘look how far you have come.’ Some days I can see the future for that, and some days,  I can’t. 

I have always been the girl full of hope and faith. Even when my best friend died in high school I saw the silver lining through all the tragedy. When I medically withdrew from Lock Haven I still had so much hope for my future. But in this instant, I felt like everything I had worked for was gone. Was I still going to be able to go to school and work so hard at what  I love to do? How would I date? Will I lose my friends? When I look at this picture, I can see the innocence just disappearing. I no longer wasn’t ‘chronically ill.’

I apologize for how ‘ranty’ and ‘complainy’ these past few posts have been. I guess I have just been keeping a lot in . I don’t ever want to seem weak or bother people, so I don’t talk about how sad I am and then weeks like this happen.

All I can say is I am trying.

 

P.S. I always post on facebook when I post these but would also love for those who are reading to let me know you are! Even if it is just a simple like on facebook or in the talk to me section to the right!

 

 

 

Let’s try this again

Hey y’all

fnl.jpgAs I was having a really, really upset day I realized I hadn’t blogged in a while so I am going to start doing this again in hopes that by blogging my thoughts, my mood will slowly go up hill.

Since I have no idea where to start I am going to just give a little update about my life since my last post (my next post will be an update about my journey with endo)

In February I moved home to PA from the Outer Banks, for a multitude of reasons ranging from missing my family and mostly my endo issues. I immediately got a job as a Behavioral Health Specialist at Holy Spirit Hospital mostly working in the emergency room and inpatient psychiatry units.

I got into graduate school at Lock Haven University to begin an online program to get my Master’s degree in Clinical Mental Health Counseling for Adolescents and Children specializing in substance abuse and trauma.

As I said before today was a very bad day. As I will blog about later, my endo journey has gotten severely worse and it has really taken a toll on my mental health. As most people know, I have severe anxiety, PTSD, OCD, and depression. Even though it is mostly under control, my mental health is MASSIVELY connected to how my endo is that day. For instance, today I was off work and was diagnosed with strep throat (because yes my body is constantly fighting itself so my immune system sucks) and I just got really down about always seeing doctors.

These thoughts eventually led to a whole massive breakdown about my endo situation. I’m sick of being sick. I’m sick of being a burden to my friends and family. I’m sick of feeling like a victim and like life isn’t fair. I’m sick of asking ‘why me?’ I’m sick of looking for hope in everyday and every night I don’t have any. AND I’M SICK OF BEING HARD ON MYSELF BECAUSE OF THESE THOUGHTS. People have it so much worse, and I should be grateful to have a good family and support system. I get so mad at myself for having these thoughts.

I’m just really sick of endo controlling my life. Every time I try to not let it take control it does. I’m just really fucking sick and tired of being sick and tired.

With that said, I am hoping that by starting to blog again, I can express these thoughts intead of getting to the point of having a breakdown. If you are still here and stinking with me THANK YOU THANK YOU THANK YOU.

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i am officially a guinea pig

Hey y’all!

I thought I should take a break from my rant postings and take a post to update y’all on some new and exciting things in my life.

I recently got around to updating my About Me page since I am now an ALUMNI from The Pennsylvania State University!! We are! I also got a new job since I am no longer an intern as a Patient Care Rep at an Urgent Care in Kitty Hawk, NC and it is going fantastic!

Anyway, as far as endo updates: I do not get a third Lupron shot so my last shot was in March. At first, the second shot seemed like a good idea because towards the end of the first trial, I was feeling a little better. Granted, I never have a ‘pain free’ feeling good type of day, so my frame of reference sucks. But,  I felt enough relief to try it again. BOY WAS I WRONG. not only did my side effects get worse, but I am still dealing with them months after my shot is supposed to have worn off. Worse of the symptoms I had then and still have are the body aches, hot flashes, and insomnia/wanting to crawl out of my skin. I cannot express that feeling but I lay in bed itchy and wanting to not be in my body, like I want to escape. This was the one side effect my mom experienced that she didn’t want me to, and of course I still have it. The hot flashes are awful as well, and often cause me to get sick. While getting the shots, the first couple days I felt like I had the flu, but granted my endo pain did subside a bit. I was also told that sometimes it takes two rounds to feel the relief, so I figured I should do as told. But no, never again with those shots. I only did them so I didn’t look back and regret not doing it- but now I regret doing it.

Since I moved to Kitty Hawk and away from my doctor at Penn State Hershey Medical Center, I have been fortunate to find a great team. Living on an island means limited resources and doctors so I am lucky. My mom had seen a specialist years ago in Chicago, that we still are in contact for me and he is a life saver. He doesn’t charge us, and constantly is emailing and calling us with suggestions, new medicines, trials. I am also lucky that my doctor down here is willing to take his advice, talk to him, and be open to his new medicines, because most doctors wouldn’t be.

Which brings me to my next point- I am starting a trial on Sunday!!!! Granted it’s not a totally new trial because my mom did it years ago (it provided her great relief) but it is a little different from the one she did, so its still a trial. I will be taking necon and femara, which is used to treat breast cancer. I wasn’t totally sold on the idea of starting a breast cancer treatment, while still dealing with the effects of lupron which is the prostate cancer medicine, but hey why not I can’t pass it up. I am so excited- my mom has been trying to get me on a trial and specially this one for years , since it helped her and like I said I’m so grateful to have a doctor down here willing to prescribe me what the Chicago doctor suggests.

However, this also means I have to get my Iud out because it may screw up the trial. Because of the combo with my endo and pelvic floor disorder, I can’t even tolerate internal exams let alone speculums and my iud coming out, I originally had it put in during a laparoscopy. My doctor said  I can either take anxiety meds and come to the office to have it done, or go to the OR to be put asleep then have it taken out. I’m still undecided with what to do, but they said  I have time even from Sunday when I start the medicines to think about it.

I cannot wait to blog my journey with this trial. I always wish I would’ve started this blog in the beginning of my Lupron treatment series, so I could track that well, but since I didn’t it gives me more motivation to keep up with the femara/necon series.

oh and on top of all this excitement, Golden State Warriors are in the final championship and are in 1-0 so far!!!  and of course the bachelorette has started up again, which takes up my Mondays, as well as all my desperate tweets to get on that show. so hey I may have a semi broken heart, but at least Steph Curry is there for me always .

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relationshits

So I realized after ranting and posting about sex, that maybe I should’ve started by talking about relationships and friendships and how they have been affected by my  endometriosis. Oh well- it was what was taking up my thoughts last night and isn’t that the point of blogging

The two biggest ways endo affects my life other than the chronic pain and fatigue, is in my friendships and relationships. For this blog post, I’m just going to rant about relationships , but my next post will probably concern friendships. I truly believe my endo has given me a different outlook on relationships, because if I am finally opening up to someone about my endo, it means I trust them on a new level, and it results in me to fall even deeper because I am confiding a huge part of me in them.

As mentioned in my last blog, one of the biggest things with relationships and my endo is when do I tell the guy? If I tell him in the beginning they usually get freaked out and cut it out- if i wait then they get mad I didn’t tell them sooner and it usually is at the wrong time. So how do I win?

And how do I explain it? My usual response is tell them to google it for an explanation “but don’t look at the pictures because they are gross.” Guys don’t want to talk about ovaries and uterus and periods and stuff like that, let alone in the start of a relationship or when you  are about to have sex. Oh and yeah I can’t really ever have kids, and it hurts to have sex but yeah date me….

My first real boyfriend is the one who went through the diagnosis process with me and I couldn’t have asked for someone better. He raised the bar in that department and set an unreachable standard.

One boyfriend, the only thing i THOUGHT he did right was concerning my endo. He went through one of my surgeries with me, cuddled me on bad days, and let me complain when I wanted to. Well, this is till I found out he was hooking up with his ex behind my back since I couldn’t have sex as much as he wanted.

There have been numerous boys who stopped talking to me as soon as I said I didn’t enjoy sex like some people, or I didn’t want to hook up as much as they did or when they did. There were boys who would get excited that I couldn’t get pregnant since “then they didn’t need to wear a condom.”

But beyond sex, my endo influences relationships daily. One of my boyfriends genuinely gave up because I kept cancelling plans and wanted to be alone. It is so hard to explain someone how draining and exhausting it is to be in chronic pain. When I was on Lupron I got sick for days after each shot. He yelled and fought with me because I couldn’t go out for dinner the night of one of my shots. He always told me I didn’t seem interested, no sorry I just don’t feel well, then I would get called dramatic.

One thing I really struggle with, is the concept that I genuinely WANT to do these things but am physically unable to. Do you really think I don’t want to go on dates? I would much rather be going out then cuddled in my bed with my heating pad all the time. It is so frustrating to be held back by a chronic illness, and especially one that a boy will not understand at all.

As many of you know  I am OBSESSED with The Bachelorette/Bachelor series. It is a life goal of mine to get on this show and I am totally determined too. Oh and for those of you who can connect dots ******insert story about boy who thought he didn’t need to wear a condom ‘since I couldn’t get pregnant.’

I have tweeted about it many many times, but just haven’t had the courage to apply for the show – my mom has recently said she is going to nominate me but if she doesn’t I am DETERMINED. Not only am I a hopeless romantic, but it would be a great way to spread awareness about endo and open up and tell my stories.  Two of my biggest passions wrapped into one: finding love and spreading endo awareness.

Not only am I a hopeless romantic, but I think my endo and experiences concerning endo and love have given me a new outlook on love. Not only does it make me develop deeper feelings upon discussing it, but it shows their true colors. For so long I was that girl who relied on another human being for happiness. I was that girl who cried on the bathroom floor at 2 am wondering why I wasn’t good enough for the only person I loved. I blamed the fact that I couldn’t have sex and thats why they chose someone else or cheated on me. I cursed the fact that I had endo and claimed it ruined my life. I gave someone and my chronic illness the power to destroy me.

I’ve come to realise that the only person who is going to be here for me at the end of everyday is myself .Do not stick around thinking you are showing him you love him, especially sexually, thinking things will change. I have learned to not beg, please, or apologize for who I am and what I deal with everyday. Grumpy, bad pain days, good happy, pain free days. It is all a part of my life, and I refuse to settle for someone who isn’t willing to take all of me and love all of me for who I am, including my endo. The best thing that endo has taught me is how to push through everyday and to find strength when I don’t think I have any left.

Just remember- I do things with pain everyday that you wouldn’t even think of doing with even an ounce of the amount of pain I’m in, because it is my everyday life and there is nothing I can do about it.

 

 

“lets talk about sex baby”

As mentioned in my last post, I have recently dealt with a lot of things that I believe are a result of endo, and to be honest it is really hard for me to come to grips with it. I am almost 100% sure that I recently had boy drama in my life as a result of my endometriosis and its effect on sex.

First of all, why is sex so hard for us to talk about? To be honest, when  I first started this post, I had no intent on even posting it because well, I didn’t want it to be awkward and I knew most of it would be a rant. But, it shouldn’t be like that. Sex and sexuality should be something we talk about and feel comfortable to talk about.

I guess one of the reasons I think sex should be talked about is because I feel I have to talk about sex in my own life all the time. One of the most common symptoms of endometriosis is pain during sex and loss of sexual drive and this was one of the first symptoms I ever had. One of the biggest issues with endo I deal with is the impact on relationships. Friendships and relationships, but as far as relationships, I worry about when do I have the endo conversation. Do I just start out by talking about it or do I wait till I’m more comfortable? Lord knows I can’t wait til we’re about to have sex and I have to be like oh hi this is really going to hurt me can we not?

BUT WHY? Why do I have to worry about the impact my sex issues will have on a relationship? Why do I get nervous how someone is going to react when they learn it hurts me to have sex? I HATE the fact that relationships have been affected by this.

I am so, so lucky that my first “official grown up” relationship, is who I lost my virginity to and the support he gave me. In fact, no one else to this day has lived up to him in this way. Obviously the first times hurt, and because of doctor’s and research, we pretty much knew I had endometriosis so I knew that it would probably continue to hurt.

However, I will never forget when my endometriosis started to spread and anytime we tried I was brought to tears. Tears of pain, frustration, and fear he was going to break up with me.  He looked me in the eyes, with tears in his own, saying never would I break up with you just because of that. I could never do that to you. This has pretty much set the standard for how I want people to react.

Clearly, we are no longer together and I have dealt with all types of responses. I have dealt with guys who leave the relationship immediately after we talk about it, guys who are awesome and supportive and do their own research and want to learn more, guys who force it, or my new and most recent one: the guy who acts like he’ll be supportive and caring, until you finally tell him “no I don’t  want to right now”

Like I said before, it takes me a long time to open up about my endometritis, and this time around was no different. But once I did, I felt great. He told me he’d be there, support me, he apologized if he ever pushed too much, and he acted like he’d stand by my side. However, I can specifically remember the day where our total relationship changed. He came over, and it was quickly obvious he only came over for one thing. When I tried to explain that it was already a bad endo flare up week, he ignored and dismissed what I had said. I found myself trying to come up with more and more excuses- and looking up why? 1. why does anyone need to make an excuse for not having sex. Shouldn’t ‘no’ be enough? 2. why did I think I needed another excuse on top of my endo. And why when  I said no did you get forcing it and trying. when did no stop meaning no?

We were never the same after that, and I knew he genuinely left mad at me. We no longer are in contact and while he never came out and said it, I know that was when our relationship changed and to me it is disgusting yet scary.

I know my endo is a lot to handle, especially in a relationship. But the fact that its impact on sex is ruining relationships for me is scary. I know intimacy is important, don’t get me wrong, but to me, supportive means support in any and every situation.

And mostly, if you are genuinely mad at me because I said ‘no’, grow the fuck up dude. Get over yourself, endo or not, you probably weren’t that good anyway.

I’m baaaccckkkkk

First off, I would like to apologize for not posting anything recently and I hope yall still read this.

Between boy drama, school, graduation, and moving into a new apartment, I’ve been too busy with some other things to collect my thoughts enough to start a blog post.

However, I cannot wait to start posting again and I hope y’all are still along for this ride of following my blog.

I have had a terrible, terrible week. I’ve had a lot happen to me as a result of my endo lately, and it has been really hard to come to grips with. I will discuss that more in depth with my next blog post, but it is so crazy how much a chronic illness can run someone’s life. I genuinely don’t think someone without a chronic illness understands how ti feels to live everyday with a chronic illness: not a cold, or the , or a period with cramps, but day in out, everyday, being ill.

I’ve been struggling alot with loneliness lately. As yall know I moved eight hours away a couple months ago from friends and family, and after being home for graduation its been hard to be back. I appreciate all texts, calls, letters, messages, I can get, and I appreciate any of you that have reached out.

On the bright side, my Golden State Warriors just won game 7 and are Western Conference Champions and heading to the finals starting Thursday! So there is a bright side to all this madness

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