The blog I write today isn't for pity or a cry for help. I'm writing because I hope someday soon I can look back on this phase of life with awe at what I went through. That life won't always be like this. For Pete's sake, I hope its not always like this.
My craptastic ovaries required surgery almost exactly 2 years ago. At that time a tumor was removed from my left ovary and my right heavily cystic ovary was 'cleaned' out. I felt amazing 24 hours after surgery. Like I was myself again. It was truly wonderful and I was in tears at how much better I felt and the knowledge that how horrid I had felt for months, if not years, was to blame on my ovaries. I was able to know I'm not just a mean, bitchy person. Several months went by and I slowly started feeling horrible again. But by then I was pregnant with our one and only natural pregnancy. I blamed the pregnancy for making me feeling crappy again. But it just got worse and worse. For a long time I thought I was just too traumatized from losing my dad the week after his cancer diagnosis. It was so wrong, so unfair, so deeply sad. I was 14 weeks pregnant and that compounded it all. Then the baby came and I continued to feel horrible. I started Zoloft and immediately felt emotionally better. I was able to look over offenses, not freak out about my kids' behavior, not require much, if anything, from my partner. I could coast and not feel like I was drowning every day. But I gained nearly 30lbs in 8 months. And the other side effects aren't lovely either; increased sweating, low sex drive/function, etc. I decided to stop taking it and after two attempts over a few months, I got off of it.
I think during the last year of all of this I had an increasingly ominous feeling that something was wrong with me. A couple months ago I told Craig I thought I was dying and wasn't sure if it was me just scared after losing my dad or what. A month ago it became very painful to use the restroom, get up or sit down, and intimacy had been painful for a very long time. Any normal person would just go to the doctor. I didn't because of a couple reasons. Sadly, I'd felt so horrid for so long that a small part of me wanted it to be a terminal disease so I could just be done with this miserable life. The majority reason was that I knew I would need surgery for whatever was found and it would take every dime we make for the next year or two or longer. I scheduled my annual appointment, the only thing insurance pays for, and planned to talk to my doctor about my many health concerns. Before that appointment arrived I required a trip to the ER. I thought I was dying. My hands, feet, arms, legs, and tongue went numb. I couldn't move them. I had such excruciating pain it was like a monster was in my right ovary with several knives just having at it. After an entire day in the ER, I had a diagnosis. A 12 1/2 cm growth in my right ovary. I hobbled home, in tears and feeling truly helpless. The next day I saw my Ob surgeon. We scheduled surgery for the coming Friday. I applied for financial aid from the hospital and knew that whatever the cost, I didn't have another option.
My ovaries hate me. They don't play nice, they don't behave fairly. Some genetic mutation causes me to have extreme PolyCysticOvarianSyndrome. It makes me gain weight and have trouble losing any of it, it predisposes me to depression, it causes facial hair growth, acne, etc. It means I never have a period (I've had one in my entire life). It makes huge and terrible cysts, and sometimes tumors, grow in my ovaries. It's a terribly mean disease for a woman. Yup, my ovaries hate me.
Because ovaries are a special environment where things are supposed to grow, namely egg follicles into eggs, the ovaries allow tumors and cysts to grow rapidly. Each cell of the tumors and cysts release hormones into their victim. The hormones mess with weight, mental health, and cause exhaustion, fatigue, and pain. This has been my life for almost 20 years, each year seemingly worse.
So I had surgery 2 weeks ago to remove the large growth and also the right ovary. Since then I have been constantly exhausted, moody, fatigued, not feeling like myself, and to add to the fun- my hair is falling out at the root, with the follicle still on it, and in clumps throughout each day. I used to have thick hair, now you can see my scalp. My pony tail is so thin.
I am asked, daily it seems, "how are you feeling? Great since surgery?" I wish I could say yes, but I honestly feel horrible. Every day. And I wish I could just snap out of it or will my body into being healthy, but it doesn't work that way. So now I am waiting for my post op appointment with my surgeon. She can't see me until the 20th, so it's been a long wait. We will do a blood panel to check all my hormones.
After surgery I started Wellbutrin, with the intent it would function like Zoloft but without making me gain tons of weight. I didn't feel much differently on it, but have since learned that Wellbutrin has an occasional and huge side effect of making it's patients go bald. Well shit, nobody told me that. It seems like if there is a horrid side effect besides death, it will happen to me. So, I've stopped it at least until I can get in and have my hormones checked. It's scary and a blow to my already non-existent self esteem to be losing my hair. Plain and simple.
Amidst all of my health stuff, the kids passed around a puking bug and colds. Two of my children needed surgery and the baby had breathing issues after it. The fridge and freezer crapped out, which we discovered when getting out ice cream for my daughter's birthday party and the ice cream was like milk. And of course there's contract drama between the hospital and our insurance so now I'm looking at up to $40k of bills I have to negotiate between me, the hospital, the lab, the surgeon, the anesthesiologist, etc. Fun, right? This morning I was able to access the statements showing what we owe. It bummed me out for sure. Then my daughter, who did not have surgery yesterday, puked in the car. It sort of feels like I'm living in an awful dream.
I haven't had a date with my husband since July. Before that it had been 7 months. The needs a woman has before she gets married, to feel wanted, pursued, loved, and to be conversed with, don't just go away after she's married. It's been an extremely difficult and lonely season of life. I feel like I have no right to be upset or to wish life was different, since I chose this life, right? I chose to get married and have kids. I didn't choose a genetic mutation, so maybe it's OK to be mad about that? I feel like any acceptance or verbal grievance about how hard life is makes me an ungrateful person. Seems like Christians are supposed to suck it up and be happy. Clearly that's terrible dogma. I don't feel that way and I certainly don't want my friends and family to hide their sorrow and pain.
The sorrow of the last couple years of my life lives deeply in me now and I'm not sure how to get it out. I find myself questioning a sovereign God, one that doesn't intervene. Can't he see I'm drowning? Why isn't he allowing me reprieve? He could heal me. He could heal my kids. But he doesn't. I know the theology...we live on a sinful earth ruled by satan and God's perfection won't be experienced until heaven. I know that, but it's still true that if God wanted to heal, he could. If he wanted to make my 14 month old sleep without having to touch me every second of every night, he could. If he wanted to give us great health insurance, he could. I'm not writing it all off or signing up for an alternative religion....I'm just being honest. Humans struggle. This is the human condition.
And I suppose the old adage, "if you have your health, you have everything", is kind of true. I don't have my health and it sucks.
Dear Future Diana,
I hope you have made it to the other side of this valley.
I can barely wrap my head around the message of this, but it's still worth watching: