That Endo Life

On October 24, 2014 I posted a blog on ‘The low down on Endo’

http://hersweetsouthernlife.blogspot.com/2014/10/the-low-down-on-endo.html

At that time my endometriosis had been back in full swing for a while, but I was still ‘living with it’. That was actually the lost post that I wrote to this date. Jump a year later to Fall of 2015, it had only gotten worse and I finally decided to have another endo surgery. My second surgery was on December 22, 2015. When I have this surgery there is always a fear that goes through my head of ‘what if he doesn’t find anything at all and it was a waste?’, ‘what if he finds something really bad?’. You never really know what they’re going to find until you wake up after surgery.

Well, he found something alright. The endo was back and I was covered in adhesions, I had organs attached to each other from it and even intestines in the wrong place because of all the inflammation. When I heard that I was so relieved. 1. The surgery wasn’t a waste and 2. I actually had a reason for being in pain, having no energy…getting off work at 4:30 and going straight to bed for so long. I had a reason for being that way…I wasn’t just being a titty baby. With endo most people can’t look at you and tell you have it or something is wrong with you and if you’re really good at putting on a good face people may not have any clue something is wrong with you, when it’s a struggle to even get out of bed most days.

So I had proof, evidence of why I felt and acted the way I did. I even had some very graphic pictures of it all. In my head I would be sore for 2 weeks, go back to work and feel great to start off this New Year. I would actually be able to get back in the gym and would have the fresh start to be a new me by my 30^th birthday.

I can’t. I literally can’t even with how wrong the wonderful story I had in my head was…

It took me a good 6 weeks to heal from surgery. And probably 8-10 weeks to be back to normal. The surgery was intensive, he had to do a lot of work while he was in there; more than we had expected. Recovery was long. It was long and mentally draining. If that wasn’t devastating enough I was still hurting after surgery. It was hard to tell if it was actual endo pain or from surgery for a while. My doctor decided it was still endo pain on my right side. That it was hidden in the lining of my right side, ‘white endometriosis’.  Because why not?? I mean really…

Our next step was to start Lupron injections. My pharmacy insurance (Prime) was a joke during the whole process of setting this up. It took a full month to get set up and they were awful sending me back and forth to Prime and BlueCross. I’m living with a chronic pain, a disease that has no cure…I’m gonna need you to get your shit (language) together. That being said the last possible day to get my insurance worked out to start injections it was finally solved.

I’m not even sure how to tackle this explanation. Lupron. It is a drug that put my body into chemical menopause. At 29 I was in full blown menopause. It has many, many side effects, there are ‘Anti-Lupron’ support groups out there. If you take time to google it there are some people out there that REALLY hate this drug. It is even given to men with prostate cancer. If you do not take add back hormones (I am not) you cannot take the drug no more than 3-6 months. Two things my doctor always tried to keep me from having to do was Lupron injections and the Depo shot, because of the side effects. But with me still wanting to have kids one day we were now upon those options.

SIDE EFFECTS: Mild burning/pain/bruising at the injection site, hot flashes (flushing), increased sweating, night sweats, tiredness, headache, upset stomach, breast changes, acne, joint/muscle aches, trouble sleeping, reduced sexual interest, vaginal discomfort/dryness, vaginal bleeding, swelling of the ankles/feet, increased urination at night, or dizziness may occur.

Last week I got my last Lupron injection so here is a mini diary of my time on Lupron:

Month 1:

The side effects were very minimum. The shot hurt my muscles/bones the first few days. The next few weeks I had headaches. But, I was pain free for a few weeks. Pain free for the first time in months! That was huge. After all the bad stuff I had read about this drug, I thought it was absolutely amazing.

Month 2:

The shot gave me flu like symptoms the first few days. My body and muscles ached. I started having hot flashes. I would go from hot to cold. At work I had a heater on me one moment and was fanning myself the next, but they weren't completely awful…just inconvenient. I had AWFUL headaches/migraines for a few weeks. I had a few moments of being nauseous. My memory was shot.

Month 3:

I’m only one week into my third and last injection. And let me just say thank God it is the last. It hit me instantly. My doctor warned me it would be the worst, but Lawd. My whole body hurt and ached for the entire first week & a week and a half in if I have a busy day I still come home hurting/aching. I am drained. I’m still having nauseous moments. I am having hot flashes allll day looonngg. My brain is gone. Like pregnancy brain there is a Lupron brain, for sure. I wouldn't say I'm mean on lupron with mood swings, but I would say I'm very blunt and when I feel like something is not worth my energy I will let you know. I’d say the worst part of month 3 is hot flashes, joint pain, no energy & foggy brain.

So April 6, 2016…On my 30^th birthday I am in full blown menopause (temporary) and because I’m still having slight endo pain here and there I will be put on the Depo shot in a month. A lot of people have trouble turning 30, but turning 30 and still feeling ‘broke down’, turning 30 and knowing depo is your last hope of living pain free without a hysterectomy….bless it, just bless it.

All that being said I’m alive, I have good days, it’s baseball season & my Dawgs are killing it and I’m going to New Orleans this weekend with some great friends to ring in my 30’s. Here’s hoping to the 30’s being the new 20's and having a clean bill of health! From 24-30 cancer or endometriosis has consumed my life it seems, and frankly I’m not about that life.

I want to personally thank everyone who has had to put up with me these last few years of all this and especially these last 8 months (8 months straight of being in the doctors office). Thank you to the friends and family who understand and try to be knowledgeable with it all...you have no idea how much that means to me!

-Casey

The low down on Endo

This isn't an exciting fun post, especially for you guys. This is an informative post if you will about the life of someone who has endometriosis.

Some parts may be TMI for some, but I'm here to set the record straight. I'd encourage you to stop reading here if you're not in for that. Trust me you can get through the first part....all that scientific mumbo jumbo.

The mayo clinic gives this definition for endometriosis:

“Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus (endometrial implant). Endometriosis most commonly involves your ovaries, bowel or the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond your pelvic region.
In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal tissue that binds organs together.
Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop. Fortunately, effective treatments are available.”

That last sentence there, “Fortunately, effective treatments are available.”

Umm I must have missed those effective treatments in the 6 years I have been diagnosed with this disease…who knows how long I’ve actually had it.

By effective treatments do they mean surgery to ‘rid’ the disease until it decides to rear its ugly head again? Surgery is always a fun, cheap option (sarcasm font). Because you see there is no cure for this, no magic pill. Yes, there are different things such as birth control pills that can help you have a better way of life. But once you have this disease there is no getting rid of it for good. It may stay dormant for a period of time, which happened to me; praise Jesus for that break! You can’t even determine you have this disease unless you have exploratory surgery; which I had back in 2008.

Here is another definition from endometriosisassn.org:

“Endometriosis is a painful, chronic disease that affects at least 6.3 million women and girls in the U.S., 1 million in Canada, and millions more worldwide. It occurs when tissue like that which lines the uterus (tissue called the endometrium) is found outside the uterus.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation -- and can cause pain, infertility, scar tissue formation, adhesions.”

Now I tried to shorten these definitions aka take out names of lady parts and such that might be just a little much… Man I feel like I should be embarrassed to write/post this blog, but the girl writing these words right now has been in pain for FOUR weeks straight, with every week getting worse so forgive me if I’m not embarrassed or concerned about you reading this and thinking it’s not lady like.  

Through the years with some of my ailments I have had, mainly cervical cancer and endo I have realized how uneducated some people are about certain things. They will have an idea in their head of what those things bring or are about, or my favorite; they will google it and become a specialist on the matter. We all know everything on the internet is 100% true, am I right!? You don’t even want me to get started on google and cervical cancer. You can read all the internet has to offer on that, read discussion boards, etc. but every situation is different. Almost all cases of cervical cancer are from HPV; there are very few cases of having cervical cancer and not getting it from HPV…my doctor has said around 10%. Well, guess what!? I would not be me if I did not fall in a very rare category now would I?? I am indeed one of those cases of having cervical cancer, but not having HPV. The type I had can come out of nowhere and fast unlike 'normal' cervical cancer, which means I have to keep watch on it very often...it's a good thing I like my doctor ;)

Now to what bothers me about people’s thoughts on endometriosis: It’s just a bad period, it only hurts while you’re on your period, tons of people have it; it’s not that big of a deal, you don’t look sick.

Lawd. I can assure you I have not been on my cycle for 4 weeks now. Yes, a cycle is what can trigger the whole endo process but when an endo flare up occurs you are not on your cycle the WHOLE time. It’s not just a girl being a girl ‘that time of the month’. Rolling my eyes right now, for real.

So that’s just a few background facts for you. Now onto the life of someone who has endo. Aka the last four weeks in my shoes.

You never know when you will have a flare up. I can’t tell you how many times my friends have heard me say ‘my ovaries hurt’ or ‘my insides hurt’. As gross as that sounds it really is an accurate way of explaining it…not just one part of your body hurts, your whole pelvic region is in pain. It’s hard to explain this pain, someone good with words might be better at it. For me a mild pain or when you feel a flare up coming on could be when ‘my ovaries hurt’; this throbbing pain where you eventually feel like your ovaries are so swollen they may explode with any sudden movement, when you stand up from sitting down and it feels like someone stabbed you and you bend over unable to walk. When one of my flare ups is in full swing I usually refer to that as ‘my insides hurt’. It’s almost like a heartbeat in your pelvic region and each time it ‘beats’ it feels like someone has both hands squeezing your insides, like you are about to explode. And this continues ALL day long. The pain is so intense at times you just want to sit in the floor and cry. Even when you medicate with Toradol, Lortab, Percocet, whatever your doctor gives you the pain is always there…not near as intense with some of those medicines, but you just always feel it…if that makes sense. The pain gets so intense that it will go into my legs and back. I will lay there and start thinking ‘Hmm maybe this isn’t the endo, maybe I have a tumor pressing against my leg’…I’m telling you the pain is that bad sometimes there is no telling what you mind can come up with. Your body is SO tired all you can think about doing when you’re not in bed is getting in bed and going to sleep, but when you are finally back in bed you just toss and turn unable to sleep because you can’t get comfortable.

This flare up has been one of my worst or I most definitely would not be posting this for the world to see. I never know when I start getting these feelings how long they will last; just the week before my cycle, during my cycle, or maybe just the week after my cycle. Or maybe all of the above plus more!?

This is one of the first times I’ve actually gotten to see my doctor during all the pain. It’s usually once it has gotten better with scheduling of appointments and not knowing how I will feel one day to the next. So I came baring a list of all questions endo, I came in pain, I came mentally and physically drained. For weeks now I have gotten off work and went home straight to bed, ya’ll I get off work at 4:30…this is not ok.

After my ‘normal’ (because I’m so normal) 6 month check-up he took me to his office to discuss endo and my list. I feel like the poor man thought he was back in medical school. We had medical books pulled out the little pharmaceutical book (not sure what you medical ppl calls those) pulled out. I was on a hunt for answers and relief. I had brought names of medicines I had researched…anything. This is why I LOVE my doctor and am ecstatic that I’m back in his care. He sat there with me and heard my plea, he assured me he believed I was in pain, and he checked everything possible hoping that I had researched something new that he had not heard of yet.

Sadly that was not the case. There is no new magic pill out there for endo. Every medicine I had brought to him I was already on just in a different form. We went over what few options I have out there which are very little for someone my age still wanting to have kids. Let me just tell you if I had kids or even just ONE kid right now there is a solution to my problem and I’d do it no questions asked, but that is not the case or solution for me at the moment.

So basically my solution is to continue with medicines I’m already on and to medicate with pain medicines during these flare ups. Remembering the pain medicines do not make the pain go away all together, they just dull it.

Even though these last few weeks have been absolutely awful pain wise, I am still one of the lucky ones (in my eyes) when it comes to having endo. Mine laid dormant for a few years and I can count on one hand how many flare ups I have a year (thanks to medication my doctor has me on). Some women are not that lucky and because of these reasons when I do have a bout that is this difficult I don’t go running begging for surgery. I don’t want to do something that serious and costly when it only happens to me a few times a year. One reason I’ve never really talked or complained about endometriosis is because it is something that happens to me so little considering what others go through, but with this awful flare up I’m reminded how bad this disease is, how little information is out there about it, how stupid you feel for letting an ‘invisible’ disease affect your way of life.

March is national Endometriosis Awareness Month and you better believe I’ll be putting a voice out there come this March about this disease; this chronic illness. Even if it does only affect my life a few times a year, during those times it is awful and no one should have to go through it. Especially the unlucky ones who have it so much worse, I can’t even imagine.

So the next time I miss work because the pain is so bad I can barely move, the next time I can’t make a trip that I’ve planned, the next time I’m in bed at 5:00PM don’t be so quickly to judge. By no means do I want you to feel sorry for me, I just want you to understand. Also, understand that I am not a druggie, those drugs are just the only thing keeping me going at that given time.

That my friends is the low down on Endo. If you have any mind blowing news that me and my doctor have not heard of, please share. I’m up for anything at this point. Also, my doctor and I did discuss foods to eat/not eat that might help give some relief. So please do not post foods for me no to eat, which is basically everything…. In case there are sufferers of this disease reading and curious, no caffeine and soy are two that he has seen results from…all the others he said you just have to play with and see how it works with your body.

Through all my research on endo I’ve come across some things that make me laugh…enjoy! Also you should instagram search #endometriosis....if you have it you'll understand and love it. ha!

But really though......

 -Casey

Rivalry-How Great Thou Art

With both football teams in MS playing so well this season there seems to be more back and forth with each other than ever before. You cannot post ONE thing related to football without offending someone. This is my perspective on it all.

MSU and TSUN are rivals; have always been and will always be. Now you can be rivals without losing that hospitality we all grew up with here in MS, but I can guarantee you that you will never see me cheering on or high-fiving a TSUN team after a victory.

I have caught so much heat lately about this. One question I’d like to ask some of you is: Where were you back when these MS teams weren’t doing so well?? I can’t help but notice a lot of the ones annoyed by this rivalry are ones I didn’t even know were football fans just a few years ago.

But for the ones of you that have always been a fan and are still annoyed by me not praising the other team remember this: As much as you believe in your team, I believe in my team…

I believe my team is the best or at least can be the best.

I believe that my school’s history is greater to any other out there.

I believe that the cowbell is the absolute, most perfect thing there is and the history to it is unbeatable.

I believe we have the best fans.

I believe we have the best atmosphere, hands down.

I believe we have the nicest people on our campus.

I believe we have the most passionate people.

I believe we can do whatever we set our minds to.

Those are just a few things I believe in when it comes to MSU. Now I’d like to go over a few of my favorite and most memorable moments at MSU; in no certain order or timeline

·       My first friends I made at MSU

·       The Delta Chi house and all of the guys there (some are still my good friends today). From toga parties to Wet-N-Wild it was a great time during college.

·       I can’t forget about my ATO’s either.

·       Basketball games with Darnell

·       Rick’s

·       Ladies night at State Theater

·       Ladies night at State Theater….it was that much fun, just ask Darnell

·       Little London

·       The Veranda

·       Riding back roads

·       The Anthony Johnson end zone interception…103 yard touchdown run against Alabama which eventually led to us upsetting them for two years straight. I will never forget the atmosphere and sound of those cowbells under the stadium as we were leaving that game.

·       Being 1 yard away from beating LSU for the first time in yeaaaars and not making it over that line………………...

·       Finally beating LSU in 2014…Man that was nice!

·       Losing to Auburn 3-2. I’m still a little scared to mention this game around Davis & Darnell.

·       Tabs

·       McCool Hall

·       Baseball has my heart and there are several special memories I hold from Dudy Noble over the years, but Super Bulldog Weekend 2014 tops the cake. Though we lost the series; I will never forget the electricity of that Saturday come from behind win in extra innings against TSUN. It was explosive! We were jumping around so much on the rig that we were knocking food off of it. Insane, amazing memory to cherish.

·       Going to every home football game in 2006 and only having a 3-9 season. Those Croom days though…

·       Walking past the drill field every day.

·       The ‘We Believe’ movement in 2012.

·       Jarvis Varnado, The King of Swat

·       Jack Cristil-We were at a friend’s cabin the night of Jack’s final broadcast and a group of us listened from a car instead of watching it inside on the TV, just to hear him one last time. And he got to say those famous words on that last broadcast…"Wrap it in Maroon and White"

·       How passionate we are at MSU

·       Waiting in line with Kayla to get Liberty Bowl tickets. We thought we were amazing that year reaching our first bowl game in over 7 years.

·       Crying when Hunter Renfroe got drafted and knowing Wes Rea was losing his best friend on the team.

·       Crying when Johnathan Holder got drafted. I was mentally not ready to lose him or to not hearing Walk the Line at games.

·       The 2013 run to the College World Series. Those few weeks are unforgettable from watching Wes Rea kill a ball into a forest, us sneaking to TV’s to watch games while Orientation was going on, the ball Renfroe caught that we all thought was going over the wall, to the very last moment when we became #2 in the nation. I loved seeing MSU’s brand out there so much during all that, especially with baseball.

·       Watching in person, Elijah Bailey’s injury with Brandon, Grant and Darnell. Ouch!

·       Decorating my own cowbell & buying cowbells for my nephew and nieces even if their momma is a TSUN fan ;)

·       Crying my eyes out over the passing of Jack Cristil. It was like he was a part of my family. Such a sad day for the Bulldog family…

·       Watching the SEC Tournament with Kayla and thinking an earthquake was happening in Atlanta. In all actuality it was a tornado…those blonde moments…  

This list could go for days if I would let it. These things are all memories and experiences I had at MSU. They are things I will always cherish. They make me love my university like no other.

So for all of you fans of other teams out there I’m sure you have your own list. And when making your list if you don’t shed a tear then you might want to find another calling or team in your life. I’m sure you think your list trumps my list. I’m here to tell you no matter how bad we are, no matter how mad you get at me for praising my team and pointing out the faults in yours, no matter how much you hate our traditions aka cowbells; I don’t care.

The passion I love and fight for my team with is what makes the Bulldog nation what it is today; after all these years. We bleed maroon and white, we are family and we are #1.

Snarl your nose in disgust for me not praising your team and thinking my team is superior, for having pride and unconditional love for my team. The same pride and love I hope you have for your team.

Some people will never understand this; they will never understand the passion I have for MSU. That passion makes Starkville, MS my home and MSU my family. And we all know you don’t mess with someone’s family!

From College World Series runs to National Championship runs we will cherish the moments all the same. We will take in every second of the national spotlight being shinned on our team and school. We will boast about all the awards, front page covers and rankings we get. Down in these parts these moments don’t happen often, but when they do it just makes it that much sweeter!

Hail State!!