This is My Normal

My journey of kicking endometriosis's butt

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.

 

 

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“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.

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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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thanks Dr. Drew

As my last post mentioned,  I went through many, many doctors and many different diagnoses before reaching one of endometriosis.

My mom sent me this article about Dr. Drew and his feelings towards endometriosis. Now, I only know of Dr. Drew from MTV’s Teen Mom and have never had good or bad feelings towards him.

As disgusting, heartbreaking, and frustrating this article is to read, I know that he isn’t the only who feels this way, and that this is actually more common than most people would think.

I am posting the link to the article about Dr. Drew’s feelings towards endometriosis below,  however here is a summary for those who don’t have time:

“These are what we call sort of functional disorders. Everything you mentioned, everything you mentioned, are things that actually aren’t discernibly pathological. They’re sort of — they’re what we call ‘garbage bag disorders,’ when you can’t think of anything else, you go ‘eh, well it’s that.’ So it then makes me question why is she so somatically preoccupied that she’s visiting doctors all the time with pains and urinary symptoms and pelvic symptoms, and then that makes me wonder, was she sexually abused growing up?” – Dr Drew

Link to the article:

 http://jezebel.com/dr-drew-insults-women-with-endometriosis-ignites-mass-1568906681

This past weekend, I had two simliar disucssions with both my grandma and mom.  Both resulted in me venting and them trying to make me feel better, with a little ranting in between.

My mom’s ranting came from the place of a doctor’s view who is trying treat you. I was having a hopeless, disappointed, sad day concerning my endo and was frustrated with the lack of help from doctors. My mom reminded me that as a doctor, you came into this field to ‘fix’ people. How awful must it be to know what’s wrong with someone and be unable to fix them?

My grandma’s rant came from a place of wonder as to how people and doctor’s especially can be so uneducated. If this is so common (1/1o women) and doctor’s study so many chronic illnesses, how can they be so clueless when it comes to endometriosis. I can honestly say I”ve had to explain endometriosis to more doctors than they have explained it to me.

Well, end rant. Thanks alot Dr. Drew. If my debilitating illness doesn’t hurt enough already, now my feelings are hurt as well.

 

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How I Got Here

For my first “official” post on this blog, I figured I’d talk a little about how I got to where I am today with my endometriosis.

Growing up, I always attended doctors appointments with my mom where the doctor would make a smart ass comment about how I would have a long journey ahead of me (at 8 years old this clearly carried no weight) or would say to me “see you when your turn 16!” Little did I know how true this all was.

I remember my first couple of doctor’s appointments like they were yesterday. I left with the diagnosis of acid reflux, a stomach ulcer, and IBS ,  and about 4 different prescriptions.

After months and months with no relief, I saw a different doctor. Same diagnosis – new medicines. In addition to these new prescriptions, I also left in tears.

Then comes the third, fourth,  and fifth doctors who said there’s no way my endo should be causing the pain I’m in so I must have a cyst. After many ultrasounds, x-rays, and many, many, tears and time wasted, I was referred to an endocrinologist.

After one laparoscopic surgery, which results in missing 3-4 weeks of school, I was told nothing was wrong with me and it was all in my head, for which I should see a psychiatrist.

okay true.

As mentioned, my mom had pretty bad endometriosis herself: ovaries, lungs, pelvic floor, intestines, diaphragm, and sciatic nerve. If you don’t know my mom, she is from Jersey, and it is very obvious when she’s is mad. You don’t mess with my mom.

My mom called all the doctor’s I had seen before demanding another appointment. These appointments were basically my mom yelling at them demanding answers for my pain and refusing to take anything less than a diagnosis for endometriosis.  I’ve never seen her madder than when we would see a doctor and she would tell them they had no idea what they were talking about.

My mom had seen a specialist, an award-winning doctor in Chicago a couple of times who not only saved her  life, he offered to save mine years in advance. He always told her that he knew I would be needing to see him at some point. After phone calls with him, he referred me to the doctor who basically saved my life through Penn State Medical.

My first visit he listened to my telling of all my visits, being told I was crazy, needed a therapist, it was all in my head, and the physical and mental pain these other doctors had put me through. He scheduled an immediate laparoscopy which also meant getting all my school stuff for the next month figured out.

The first thing he told me when I woke up from anesthesia was, “well, honey, you surely aren’t crazy.” Upon seeing my mom for the first time after he talked to her, she was still crying and you could tell that she had been crying for a while. My dad was also there, and he had told me he wasn’t coming till later that day so I figured I was dead and this was my view as a ghost. Both my parents crying, my mom on the phone repeating “this is all my fault, it is so bad.” This is when I was told how severe my endometriosis really was, and how much damage had been done because of all the time spent wasted.

So, 5 years later and I finally got the diagnosis I had been waiting for, just maybe a little worse than I expected: Stage 4 (worst kind) of endometriosis in my bladder, covering my pelvic floor, intestine, and the bladder was so damaged it was bleeding uncontrollably causing interstitial cystitis.

The diagnosis of fibromyalgia, sciatic nerve damage, and pelvic nerve damage, and endo in my lung and diaphragm came within the past six months. So no, I’m not crazy. And yes, maybe I complain too much sometimes, but I can promise the complaining that you are dealing with from, is incredibly small to the pain I’m in.

I wish there was a quick summary for this, but unfortunately there is not. Look for future blogs about medicines and treatments I have tried and am currently on.

I also wish there was a happy ending to all of this, however I am unable to always find one. For me, the constant love and support that surrounds me is forever my silver living.

Look for future blogs about medicines and treatments I have tried and am currently on.

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what the hell am i doing

Well, let’s just get this out of the way. I have no idea what I’m doing, so bare with me while I learn my way through blogging. I guess being awkward in person means being awkward online as well. 

One day as I was complaining about the daily issues my endometriosis causes, I realized maybe all this complaining could go to good use. After some reassurance from my best friends and the interest they showed in learning more about endo, I decided why the hell not make a blog about what living with endo is like.

My next couple of posts will focus on my journey to being diagnosed with endo, diagnoses, treatments, etc. From there I will be able to discuss any updates and knowledge I have learned.

Endo is a tricky little illness for many reasons: there is NO CURE, so doctors usually give up trying to help because they feel defeated (well how do you think I feel), most people DON’T LOOK SICK, even though the internal struggles going on, and mostly it is just plain misunderstood and people are uneducated.

So there’s the purpose of my blog. To educate, rant, complain, and spread awareness. If I’m going to struggle with this illness for the rest of my life, I might as well do something with it to help others right?

So, at least I got the first post out of the way. Please feel free to give comments, suggestions, tips, help, whatever, in any way possible you know to contact me. I’d love feedback and help.

And lastly thank you. Thank you for taking the time out of your busy life to check out my blog. I really, really appreciate it.

xoxoxoxoxoxo

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