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How to Rock Having an Incurable Disease

October 10, 2017

Third time's a charm. Or so they say. And as I sit here at 6:30 a.m. in the waiting room, I can't help but think of what a whirlwind my life has been in the past 3.5 years - the last time I had surgery.

 

Why are you having surgery, MJ? Well, because I have a awful, albeit, non-life threatening disease called Endometriosis.

Endo - what? Well, you're about to learn more about me than you probably ever cared to know. 🤣  Essentially, it's a disease where the uterine lining decides to grow in other random parts of your body. It's accompanied by nausea, vomiting, and unbelievably painful cramps when it's "that time of month," mainly because the cells get trapped and cause tiny patches of internal bleeding. Fun times. But it's a serious disease that effects a lot of women: 

http://endometriosis.org/resources/articles/myths/

My doctor suspected I might have endo when I was in high school, but it wasn't until I was 19 that I decided to have my first laparoscopic surgery. The crazy thing about this disease is that it cannot actually be diagnosed without having surgery. It doesn't show up on CT Scans, x-rays or MRIs. They have to cut you open and explore your insides! Like, I said, loads of fun.

Anyway, I was a freshmen in college when, on a random Monday night after my choir practice, I collapsed in the bathroom because I had the worst cramps in the world. I can't remember if I called 911 or if someone else did, but I was carted off in an ambulance to St. Joseph's hospital in West Bend, WI. It was then that I finally decided to take this disease seriously.

The first surgery went exceptionally well, and it confirmed my doctor's suspicion that I did, in fact, have endo. They were able to excise most of it, not all, but said that the benefits of the surgery would last anywhere from 5 - 10 years. It made a tremendous difference in my well-being for nearly a decade. But then, a few weeks shy my 28th birthday, I had another episode where I collapsed in the bathroom (only this time, I was at work) wound up in the back of an ambulance and was carted off to the hospital again. Also, as an almost 28 year old, I didn't have health insurance. But I knew it was time for another surgery.

It's weird how things work out, because shortly after that incident, I was offered a job in Minnesota, that had great pay and great benefits. I had to pack up my life and move 5 hours away from home, but at the time, I didn't care. I told myself, "If I don't move now, I'm never going to leave my hometown...and also, I need health insurance." 6 months after I moved up there, I had another surgery. But this time, the results were inconclusive. They didn't really find much endo, and they couldn't understand why I was having so much pain.

I went in for a check-up 6 weeks after my surgery, and my symptoms hand't changed much. Something still felt off. But the doctor kind of brushed me off. She made me feel like it was all in my head. But if I've learned anything, it's that you spend all your time in your body. You know it better than any doctor, nurse, specialist or surgeon. If something seems off - it probably is.

About 9 months post-op, I started getting this aching pain on my right shoulder blade. I didn't know why. I wasn't working out any more than normal, so I thought maybe I was sleeping funny. But after a few weeks of sleeping in a different position, I still had this dull, aching pain. About 3 or 4 months after the pain began, I realized my shoulder pain was coinciding with my cycle. What. The. Heck. I honestly thought I was losing my mind. Finally, I started scouring the inter-webs and stumbled upon what I hoped was an answer to to my pain: Diaphragmatic Endometriosis.

I always knew I was a rare breed. You know, like, a unicorn. 🦄  Endometriosis only affects about 10-15% of the female population. But I, not wanting to be outdone, had to have Diaphragmatic Endometriosis, which effects about 1% of that 10-15%. In other words, it's really freakin' uncommon. http://www.livestrong.com/article/254118-symptoms-of-diaphragmatic-endometriosis/

My symptoms deteriorated significantly in the 3 years since I had my unsuccessful surgery. To be fair, endo typically attacks the pelvic region. Surgeons don't think to look for it on other places where it may hide - liver, diaphragm, intestines, etc. I'll spare you the details of the havoc it's wreaked on my digestive track, and going through a tremendous amount of stress has not helped either.

 

The biggest blessing of my life arrived when I finally found a doctor who has dedicated his life to women's health, Dr. Camran Nezhat. He not only listed to my story he wanted to make a difference. He wanted to help relieve me from my pain. He's the reason why I'm sitting in Palo Alto this morning, awaiting yet another surgery. http://nezhat.org/

 

Me, sitting in the waiting room at 6:30 a.m. before my 3rd laparoscopy. Third time's a charm, right?

 

Although I'm not in chronic pain, I'm in chronic discomfort accompanied with excruciating pain for 1 - 2 days each month. But having a chronic illness has really hindered my quality of life - I just didn't even realize it.

Until this morning. This morning as I sat, the only thought that went through my head was, "Why?" And I'm not one to hold a victim mentality, and I rarely throw a pity party for myself. But I just kept thinking, "Why me? How come I have this stupid disease? Why do I have to deal with the pain? Why have I been put through the ringer so much lately? Will I ever catch a break?" And as I sat here, feeling myself going down the rabbit hole, a verse popped into my mind. Psalm 46:10... "Be still, and know that I am God."

So I was still. I took a deep breath, and I prayed.

And as I prayed, Psalm 40:29 came to me... "He gives strength to the weary and increases the power of the weak."

And finally, as I was wrapping up my thoughts, I was left with 2 Corinthians 12:9-10 "But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong."

And I was at peace. And as I look back on everything that's happened in the past 3.5 years. I realized that I'm exactly where I'm supposed to be.

So as I head into surgery for the third time this morning, I ask for your prayers, your positive vibes, your words of encouragement, and any love you want to send my way.

Whatever you're facing today, know that God's got you, the Universe loves you, you matter more than you know, and you're capable of handling whatever obstacles come your way. 

 

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