Showing posts with label CEC. Show all posts
Showing posts with label CEC. Show all posts

Monday, February 20, 2017

Big News!

This is only the single most exciting news Ive gotten in months and I waited a WHOLE week to share it! Whats wrong with me?!

Last Monday I got the call from the CEC and Dr. Sinervos office! I am officially scheduled for my April excision surgery with one of the top doctors! Ive been asked if Im nervous and the answer is ABSOLUTELY NOT! Ive had so many unsuccessful abdominal surgeries performed by surgeons who werent skilled enough to fix me. No more band-aids for this girls endo pain! I already feel so highly optimistic simply from hearing all the success stories and from the amount of kindness and hospitality Ive received from every single person at the CEC. Theyve been nothing short of amazing thus far!
Plane tickets are bought for a 10 day trip to Atlanta for Mr. Pennington and I. We are staying a considerably long time because we are still unsure how invasive the operation will be. Everything will be done via LAPEX (laser), but depending on which parts of my body are impacted by the disease and to what extreme, I could be in the hospital anywhere from 23 hours to 4 days!

Today we put the final touch on our travel plans by securing a place to stay. This has been insanely stressful for me and absolutely mind consuming. I woke up in a panic (full blown, pass the wine so I can take my Xanax PANIC) this morning after dreaming about it all night long. Hotels are outrageous for 10 day stays, some places have terrible (like.dog poop on the bathroom floor of the hotel room terrible) ratings, some places are so far away from my doctor and the hospital, what if this happens, or what if that does? BLAH! I finally rented a studio apartment for the 10 days thats within half hour of the airport, the CEC, and the hospital. The best part was that the fare for this was almost HALF of what we were being quoted for a medical discount at area hotels! I told my mom today that I think Im moving to Atlanta. Everyone Ive dealt with has been so flipping sweet! The property manager at this place secured me a first floor studio since stairs arent ideal post-op, and was more than happy to answer any questions I had as well as provide me with documentation I needed.

I am beyond giddy to make this trip! The only thing thats a total bummer is being away from my third graders for several weeks. Its been a 4 day weekend and I miss them! I guess its a good thing Im only a mile from school and can visit often!

Now all I have to do is hurry up and wait. 7 weeks to go!
XoXo

Jessica

Friday, January 27, 2017

My Life with Endo...

Hey guys! I hope you are comfy in your sweats with a big mug of coffee and all ready to learn about, what else? My corrupted reproductive system! As I mentioned in my initial post, I am an endometriosis sufferer. Reading so many inspirational blog posts about people, like me, who are living life to its fullest with this disease is what led me to start this blog up. (Well that and I swear I really want to be a super kick-ass teacher blogger one of these days! Baby steps.) It’s a big step for me to share this story with potentially the entire world, but it’s time. I hope a young girl out there stumbles upon this and thinks “wow! That’s me! I’m not insane like all of the 27 doctors I’ve been to claim I am”. 

In the beginning
I started having periods around age 10. I was sooo lucky to start the day before leaving for a week long church camp. For being church camp, that was a hellacious aspect of it! Like most young girls, I was mostly irregular with my cycles until I was around 13. Around that time was when the pain started each month. All through high school I’d have horrible cramping and awful periods. Such is lifeso they say. (“they” can kiss my butt, because this was NOT normal!) I was able to function, go to school, work, whatever with the help of ibuprofen, but it was pretty painful. I also was no stranger to ovarian cysts. I’d find myself in pain often and every time an ultrasound was performed there’d be a cyst or four.

After High school
Somewhere around age 19 or 20 I started having REALLY bad periods. TMI, but clots and nonstop bleeding were only the beginning. The pain was unbelievable. I would spike a fever, get dizzy, throw up. All I could manage to do was lay in bed with a heating pad. At this point I started my stint of getting gynecological opinions. Most wrote me off or suggested birth control pills (which, by the way, make Jessica one CRAZY lady!). My mom had an OB Nurse practitioner at the time that she really loved. I gave her a try. This woman actually told my mother after my visit (hello where were the hippaa laws in 2003?!) that I was a “hysterically dramatic young lady who needed to get used to being a woman”. (making yet another mental note to write that bitch a letter to explain endometriosis) This was all I ever heard. No one took me for my word.

Moving ahead
I began having severe right sided pains one day that took my breath away. I went to an old school doctor who diagnosed me with appendicitis (no x-rays, no CT scanjust his gut feeling). I went in for an emergency appendectomy. While my appendix was a tiny big inflamed, they found the bigger problem was a big ovarian cyst on my right ovary. They removed the cyst and appendix. That was the day I was diagnosed with endometriosis. Stage 4 endometriosis. One of the worst cases my amazing surgeon had EVER seen. She told my mom that what I felt every month was likely comparable to childbirth. (Hystericcally dramatic WHAT?!)

It’s Baby Time
The surgeon who diagnosed me cleaned out as much as she could. I had my first baby boy when I was 25. When I was 26 I had another surgery to clean things up laparoscopically. I was told to go on birth control (crazy maker) for 3 months and then try like crazy for baby number 2. Well, once you learn more about my family you’ll know that baby number 2 is a very persistent and determined little fella! I got pregnant while taking that first month of birth control. I’m unbelievably blessed to have these little boys because so many women with endo can’t conceive. I remind myself how lucky I am every time I break up a “he’s breathing on me!” fight.

Baby number 2 did not, however, have an uneventful birth. He tried escaping around 28 weeks. I ended up on bedrest (with a toddler at home!) and had him at around 35 weeks. When he was born, my uterus was so weak from endometriosis that it ruptured. I’m talking split like a banana. You’re welcome for the visual. My midwife called in doctors and surgeons and I was swept off to the OR. The only thing they could do was a hysterectomy because I had lost over half the blood in my body and they were losing me. I woke up 8 hours later in ICU and had yet to hold my precious baby boy. I was actually relieved to know they’d done the hyster and asked why on earth they left my problematic ovaries! Of course, hey had to because there was too much trauma already. Fun fact for yaI still had a MONTHLY PERIOD after my hysterectomy. And still do.

Soccer Ball Belly.
The year I graduated college and was hired for my first teaching job, I felt like I was just getting fatter by the second. I looked 4 months pregnant and didn’t know why. Lo and beholdanother ovarian cyst. This sucker was the size of a soccer ball! They took the right ovary in emergency surgery and againcleaned up a lot of endo. They told me that there was so much scar tissue and adhesion that they couldn’t get it all. My left ovary was “glued” to my pelvic wall, hip, bowel, bladder, and who knows what else..

Doctors, and Nurses, and KinesiologistsOH MY!
My last surgery was in 2011. Since then my pain has worsened, my stomach/GI tract has developed an assortment of awful symptoms, I have monthly bleeding (that sometimes lasts weeks), migraine headaches, vertigo, diarrhea, vomitingyou name it! I’ve been to every doctor in the area. I’ve been to Cleveland Clinic (which was a wasted trip, but it’s ok because I LOVE CLE!). The only small bit of relief I got from any of it was visiting a chiropractor who specialized in kinesiology on a regular basis. That lady was an angel sent straight from heaventhen she retired!
Almost 2 months ago I woke up feeling the worst pain I’ve ever felt. EVER. Childbirth included (and you just read how great of an experience THAT was for me). I called into school and couldn’t even do sub plans. My dad took my kids to school and my mom rushed me to the ER (thank GOD for parents who live close by). I spent my entire morning in the ER and they found nothing. As suspected. It was endometriosis flaring up. *side note-I was drinking 3-5 coffees a day the week prior. Coffee and endo don’t mix.

When I got home that day I spent HOURS searching the internet. I’d searched before a million times and never found anything new. But this timeI decided to visit the website for the Center for Endometriosis Care. I’d been to the site before, but for whatever reason didn’t’ think it was for me. My best friend told me that one of her friends had surgery there and felt it was the best move she ever made.

I decided that I had to do something. Life like this is unbearable for me, my husband, my kids.hell, even the dogs suffer when mama is in pain! I filled out all 27 pages of paperwork, wrote a personal narrative of life with this disease, rounded up all my records and paid 7 bucks to send one big ol’ envelope to Atlanta! I heard from them when they received my files, and again a few days later when the surgeon called me. He was so kind and personable. He answered all my questions before I could even ask them! Right now I am in the process of getting insurance approval and then scheduling my excision. I’m really hoping to go in April over my school’s extended Easter break.

I’m hopeful that this surgery will be what it takes to get my life back on track! Don’t get me wrongI am one lucky lady in every other aspect of life. But endo really puts a damper on a lot of things and I will be so thankful to see it go away once and for all!!

If you’ve read all of this.you need to go refill that coffee, I’m sure! But don’t drink 5 cups if you’re an endo sufferer. It won’t end well.trust me.
Xoxo