The reality of finding help for PMDD

It was after a few emotional months of torture that I figured out that I suffer from PMDD. I had slowly started feeling worse every month after my daughter stopped breastfeeding, and I couldn’t figure out what was going on. Eventually my symptoms were so severe that I would be convinced that I was pregnant again. One month I was so sure that I ordered a shirt off Etsy to give to my husband, announcing the pregnancy. I tucked it away to give to him along with the positive pregnancy test that I was sure would happen any day. Instead, I got my period.

We weren’t trying to get pregnant, so there were no big letdowns for us to share. But every month I would get all the symptoms that used to warn me about a baby, and every month my mind would go from “I don’t want a baby right now,” to “Maybe this would be nice.” As soon as my mind went far enough to fantasize about that imaginary baby and get excited about it, that’s when the illusion would shatter. Wanting more kids or not, it was hell going through that roller coaster of emotions over and over again.

I finally talked to my husband about it and he agreed that something was definitely wrong. I started doing some research and I stumbled on a video online of a woman explaining her condition, that I’ve never heard of, called premenstrual dysphoric disorder. She mentioned 11 symptoms that someone may go through, and you need to check off at least 5 before a doctor would diagnose you. I watched the video through and mentally checked off every single thing she talked about. I was the perfect match for a condition that I had no clue existed.

pmdd01_amanda_excell_web Since then I’ve done a ton of research and spoken to my doctors about it, with no luck. My general practitioner, although a very nice woman, gave me antidepressants to treat my depression and didn’t seem to have any clue what I was talking about when i mentioned the thought of PMDD. I figured I’d try her meds since I was depressed anyway. And when those weren’t doing much, I moved on to my obgyn. He reluctantly admitted that I may be dealing with PMDD, and prescribed me birth control. It was horrible, and when I called to talk about it, he admitted that trying more and more bc pills may not be very helpful but if I wanted to, he’d be more than happy to give me a script for Prozac. He admitted that he didn’t know much about treating me, and suggested I look for a specialist.

After that conversation with my ob, I was working on my second antidepressant, so I gave that a bit more time and didn’t really notice that I was getting worse. After all the experimentation with new medications, I had gained 30 pounds on my small 5’2″ frame. Enough to put strain on my already weak back and make me feel worse. And my symptoms were still getting worse with every cycle I had. At this point, my boobs feel like they’ve been used as punching bags, the slightest look can make me burst out in tears, and the most minor annoyance can make me rage against the world as if I am SHE HULK. I’m not even gonna talk about how bad it gets during the last few days, because no one needs to worry about me that much.

So onto what I thought would be my best bet. I had finally found an obgyn claiming to be practiced in treating pmdd. His receptionist sounded less than enthusiastic on the phone, but he had good reviews and he was the only one who seemed to know anything about it after calling a dozen other doctors in my area.

To make a long, emotional story short, the receptionist was as bored and uncaring as she sounded on the phone, as were all the other women working in the office. The doctor himself, after making me wait way too long, batted his pretty eyes at me and apparently decided upon first contact not to take me seriously. I could see it in his eyes as soon as he smiled at me that he was gonna be no help. After asking why I was there, I told him about the PMDD and he goes on this long, textbook description of the difference between PMS and PMDD. You know, because since I came here for that specific purpose, I can’t possibly know what it is. Then he says, “It’s not a real diagnosis, it’s basically a small step up from PMS.” WANTING TO KILL MYSELF ONCE A MONTH IS A SMALL STEP UP FROM SOME MINOR CRAMPS? Tell me more about your unending wisdom! zooeydeschanelgrosssobbing

Luckily for him, I am currently in my vulnerable, crying all the time stage and I got so defeated that I could barely speak. He asked a few more questions, talked over me every time I tried to talk, and basically bullied me into scheduling an appointment for an IUD that I know nothing about. Which apparently was too much of an inconvenience to explain to me. So in the end, he listened to nothing I had to say, and assumed he knew everything about what I needed. He tried to tell me that all he could do was prescribe me Zoloft or Prozac because that’s the only sort of treatment that can be done. And after telling him that I’ve already tried Zoloft and Lexapro, he started telling me with the most unfeeling, judgmental voice I’ve ever heard that I have too many issues going on at once and he can’t help me. I need to find a psychiatrist so they can work with me to figure out what doses of medications I need. When I tried to ask about other options(that I’ve done research on and I know can help tremendously) he cut me off and said no, there’s nothing else that can be done. It’s Prozac or nothing.

I wanna be clear, I think that he honestly believes that the only way to treat this is to throw antidepressants at women and hope for the best. Too many doctors don’t have any knowledge of this condition since it’s a fairly new discovery. Previously, women were diagnosed with bipolar disorder because doctors couldn’t figure it out!

My issues with him run deeper than a lack of understanding. With him, it’s about advertising on his website that he has experience in a disorder he knows nothing about. It’s about his horrific bedside manner, talking over a patient who’s clearly about to burst into tears in front of him. It’s treating her like she’s crazy, like she’s an idiot who doesn’t understand anything about her own body. It’s the fact that he was completely uncaring and wanted nothing more than to get me out of his office.

So doc, if you ever read this. Thanks for making my day. I was in tears before I even got my kids in the car. By the time I got home, I was having a full blown panic attack. It took me hours to stop crying. Today I’ll be calling to cancel that IUD that you bullied me into trying. And if I’m lucky, I’m going to find somewhere to let other women know what kind of doctor you really are. The kind who doesn’t care very much. The kind who makes a woman in pain lose hope of finding the help she needs. So thanks for that! When I do finally find a psychiatrist, I’m sure we’ll have a nice, lengthy discussion about you.

Letting my kids share a bedroom was a horrible idea

Recently I made a very brave and kind of disastrous decision. Against the warning of my husband, I decided to put the kids in the same bedroom. The thought was good, I figured if I put their beds in one room, I could make the other into a play room. They could get their energy out during the day, and be free of trouble when they are supposed to be sleeping at night. Sounds like a good plan, right?

So in case anyone needs a laugh and would like to think of their own children as angels for a minute, here’s a timeline of how this past week has gone.

First night: Boy removes all diapers and wipes from the diaper station in the closet and throws them all around the room. Same with every single toy. Both kids stay up giggling/fighting and playing with every talking/singing toy they have at the same time. Mommy removes all talking toys, puts the diapers away, sleepily hides the diapers and puts the wipes in a plastic bag.

Second night: Kids are playing, we hear them fight for a minute, then boy starts screaming. Mommy runs upstairs to find him with a black eye, and girl looking guilty. Elsa is confiscated and classified as a weapon, boo boos are kissed and Tylenol is administered. Girl gets talk about not using Disney princesses to beat up her brother. Repeat after me, Elsa is NOT a weapon!

Third night: Mommy and Daddy have a date night! Our wonderful babysitters check on the kids and find diaper cream everywhere. Not so bad, considering. It’s cleaned up and Mommy confiscates all diaper cream. (Even though it was up high in the first place!) These guys are tricky. How did they reach that high?!

Fourth night: Kids stay up too late again, less fighting and more playing. Lots of screaming though. Mommy tells them to shush and go to bed a thousand times. Tempers are lost, apologies made and everybody gets hugs and kisses.
- Wake up to find an entire bottle of lotion covering the carpet, blankets and my daughters bed. I guess they needed to make up for the lack of trouble the night before. Also, where the heck did the lotion come from?

Fifth night: Beds have been changed and room cleaned. Kids get quiet earlier than usual. With naive hope, Mommy goes to check on “sleeping” kids. Every single piece of clothing has been removed from drawers, and every shirt torn from the closet. Diaper station, although now empty, is torn down and thrown on the floor. Toys everywhere. Wipes out of baggie and all over the floor. Child sized rocking chair has been placed on top of daughters bed, and the beautiful Shakespeare quote on the wall has been torn off, letter by letter. Mommy, with fire burning in her eyes, tells children to get back in bed. They sense danger, and go to sleep with no more issues.

I may have missed a day or two in there. My memory has become selective due to high levels of crazy. It’s a good thing they’re cute.

Please, you wonderful mommies and daddies out there, please share if you have trouble makers too! I can’t be the only one about to lose my mind. And I hope to God somebody gets a laugh out of this. One day I may laugh about it too.

I have a confession

I don’t have the heart or the patience for specifics. But here it is in a nutshell. Something Christians hear all the time is how God will never give us more than we can handle. God is supposed to be our strength, our healer, deliverer, father, etc. I’ve been in church my entire life and I graduated Bible school with honors. I know all that. In my head, I know all that. The thing is, I can’t feel it anymore.

If God won’t give us more than we can handle, why did He make me with a broken body? If we are created in His image, then why is my brain not normal? Why do I need to experience so much pain, praying and crying out to Him, to get no answer, no relief? Why would He give me a child that I can’t handle? Why even allow a child to go through what my son goes through? Why would He take a little baby away from me, why would He allow my body to betray me even more with this Pmdd crap I’d never even heard of, why would He allow my marriage to suffer, allow me to put my family through all of this?

The fact is, I’m ANGRY.

I have tried my best to do things right. I’ve gone to church every single Sunday I’m able to. I’ve served in the church nursery for years longer than I planned. I listen to Christian music, I don’t curse. I don’t get drunk or talk bad against my husband. I have tried to follow devotionals and have prayer time. I try to be kind and positive.

I have no intention of leaving the church, or changing my lifestyle and walking away from God. In fact, it’s the opposite. Besides the trivial resolutions to lose weight and save more money, my big thing this year is that I want to find the peace that I haven’t felt in so long. I started this blog because I got sick of putting rose colored glasses on anyone looking into my life. I’m sick of faking it. So there it is, bright and loud and painful. I’m admitting that I am angry at God. Because I’m hoping that this can be a first step in healing and coming back to Him.

Through all those years of struggle, He may not have magically fixed anything, but He was there. Yes, He still allowed all these things to happen in my life. But there’s a huge difference between a few years ago and now. Then, if I was suffering through something, I still felt like I had this supernatural safety net that would catch me if I ever fell too far. I still had this sense of peace, and when I smiled through trials, it was real.

Now I don’t feel that anymore. The difference is now I feel alone, even though I’m not. I’ve got a family who’s recently stood behind me even more than ever before. I’ve got a best friend who looks out for me and a group of ladies who check in on me when I’m MIA. Despite our struggles together, I’ve got a husband who’s response to hardship is to step up and figure out how to make it better. Anyone should be able to say things are good right now.

But it’s too hard for me to see past the bad to appreciate the good. I’m currently sitting at home, chugging water and feeling guilty for not doing my workout for the day. My whole body hurts and I feel anxious and I’m wondering when I’ll feel better. I’m having some withdrawal symptoms from coming off of antidepressants that weren’t right for me. I can’t help but be angry. But I know deep down I’ve still got hope. It’s a new year, and it’s time to make a change.

So this year, I’m adopting this as my theme song. From my favorite Christian artist, Lauren Daigle. Hope is something I always seem to have, so now, I will stand my ground where hope can be found!

O Lord by Lauren Daigle

Though times it seems
Like I’m coming undone
This walk can often feel lonely
No matter what until this race is won
I will stand my ground where hope can be found
I will stand my ground where hope can be found

Oh, O’Lord O’Lord I know You hear my cry
Your love is lifting me above all the lies
No matter what I face, this I know in time
You’ll take all that is wrong and make it right
You’ll take all that is wrong and make it right

Your strength is found
At the end of my road
Your grace it reaches to the hurting
Still through the tears and the questioning why
I will stand my ground where hope can be found
I will stand my ground where hope can be found

Oh, O’Lord O’Lord I know You hear my cry
Your love is lifting me above all the lies
No matter what I face, this I know in time
You’ll take all that is wrong and make it right
You’ll take all that is wrong and make it right, so right

(Right, so right)

I will stand my ground where hope can be found
I will stand my ground where hope can be found(x2)

Oh! O’Lord O’Lord I know You hear my cry
Your love is lifting me above all the lies
No matter what I face this I know in time
You’ll take all that is wrong and make it right
You’ll take all that is wrong and make it right, so right
(Right, so right)

I Finally Hate My Scoliosis

When I was a kid and diagnosed with scoliosis, it didn’t mean much to me. Sure, it bothered me deep down. But as long as I didn’t have to wear a brace or look crazy different, I didn’t care. I had to drop out of ballet, gymnastics and some sports as a kid. But I didn’t want to do them much anyway. There were times throughout the years that I was embarrassed because I couldn’t keep up in gym, or I couldn’t rock the same clothes my friends did. I was different enough to notice it, but “normal” enough to hide it with baggy clothes.

I always assumed there was nothing I could do, so I decided that it would never affect me. As an adult, when I had come to terms with who I am, I decided to embrace it. Hell yeah, I was different! Different is awsome! I was arrogant enough to look at my condition as nothing but an obstacle in the way of my own vanity. Who cares if I don’t look like other women? I’m okay with how I look, so there’s no intervention needed, right?

Um, wrong. Shortly after getting married, my husband and I were pregnant with our first child. With that little baby I forgot myself altogether. Not in a sad sort of way, just the way too many women reinvent their whole lives to be about their child, and forget to take care of themselves. The thing is, when I did this, I started overlooking way too much. By the time my daughter was born, I felt weaker than I ever had before. I still pushed the blame on pregnancy and decided I’d get better with time.

Again, wrong. I overlooked all the aches and pains because I grew up with aches and pains. Pain is no stranger to me. When it got worse and more frequent, I kept blaming it on what pregnancy did to my body, and assumed with a bit of gym time I’d be fine.

Then came the winter of hell.

The winter of 2015-16 was the worst I have ever experienced. I was in so much pain that I didn’t know what to do. Like I said, I am no stranger to it. But this was different. This pain was deep, burrowing straight into my spine with a twisted hatred, bent on breaking me down. It almost felt sentient, like it had a grudge and was intent on making my life miserable. I didn’t know why, but I knew it was different. It got bad enough to send me into the worst pit of depression I’ve ever experienced. I became ~~almost~~ suicidal. Surely dying would be easier than living with this forever. But I endured, and eventually the sun came back, the cold melted away and I felt better.

It convinced me to finally seek help, and in fear of the next winter coming up, I saw my doctor. She took xrays, examined my crooked back while I stood there, exposed and afraid, and spoke into her recorder words I wish I didn’t have to hear. I tried to brace myself and block it out, but I heard the word “deformity” more than a few times. My body that I had convinced myself I was fine with, was suddenly an embarrassment. I felt like the Hunchback of Notre Dam. She had nothing but kindness and empathy in her eyes, yet I felt like there was a crowd of people watching me, pointing and whispering about my deformed body.

And that wasn’t even the worst part. I got bad news after bad news. My spine had twisted and curved more than I thought it could since I was a child. She asked if I had trouble breathing, I confirmed I did, and she explained that my ribcage was malformed, crushing my lungs. She promised to send my xrays to the in house surgeon, without much hope that he’d be able to help. And then she showed me an area of my spine that looked blurry on the xray and explained that it was arthritis developing. All I said was, “Oh, I knew something wasn’t right. I just didn’t know that was a possibility.” She offered pain pills, which I refused, and instead wrote a script for physical therapy. Later that day, I got a phone call from her. The surgeon took one look at my file and said that I would need a specialist. They couldn’t help me.

For some reason, it was the word arthritis that really bothered me. That’s an old persons word! A 25 year old woman should not have to worry about that word! I went to physical therapy once, and the youngest patient there was old enough to be my father. I think it was the first time it hit me that what I was going through was not normal, not okay, and not FAIR. Why, at such a young age, should I have to think about surgeries, doctors in far away states, chronic pain and feeling old? Why should I have to fight demonizing bouts of depression every time I’m in too much pain? Why me?

Since then I’ve turned myself into a guinea pig, trying herbs and vitamins and everything I can think of to help keep me sane and keep the pain at bay. For someone who couldn’t swallow pills before all this, I now have a pill box for each mealtime. Although I’ve still declined prescription pain pills.

snow

Now I find myself looking out the window, at all this beautiful snow, and wondering if I can even handle it. I can barely look at it without my spine aching. Now everything I do, everything I plan, is filled with doubt. Will I be strong enough to handle this? Can I get through a girls night out without screaming in pain? (The answer is no, sitting on a bar stool for 2 hours means two days of recuperating.)

I still try, I still grit my teeth, smile through the pain and do the things I want to do. But it hurts. It’s not only about the pain, it’s about the experiences that are now tinged with that red fog of fear. The fact that I can’t take the kids to the zoo without worrying that I’ll hurt my back and not keep up. Or that they’ll run in separate directions and I can’t keep up to catch them both, because I can’t breathe! What if they get hurt? Because I hurt. My physical impairment is a catalyst to my mental illnesses, boosting my anxiety and adding logs to the fire of my depression.

So, yes. After 27 years of living with this, I finally hate my scoliosis. And I’m not ashamed to say it.

Good news ladies, we aren’t crazy!

There’s big news for women who feel like they lose themselves every month and I wanted to bring that to you. I think everyone has heard of pms. It’s the brunt of jokes and the cause of many eye rolls. But what many people don’t know, is that it can get WORSE.There are those like me. It’s called PMDD, or premenstrual dysphoric disorder. While most women get at least one symptom of regular pms, about 2-4% of menstruating women suffer from PMDD instead. How can I describe this?

Imagine your worst day with pms. Now imagine you meet Dr. Jekyll and without permission, he injects you with his serum to become Mr. Hyde. You rage at the world, eat every carb and piece of chocolate that comes your way, and hate yourself and everyone around you. Until it comes crashing down.

When the rage wears off, you slip off the edge of sanity and fall deeper and deeper into a pit of depression. You fall so hard, so fast that you’ve broken something. Something in your brain doesn’t seem to work quite right anymore and you start daydreaming about dying. Deep down, you know that there’s a part of you that definitely does not want to die. You know that, logically, things are fine and you will be okay. But you can’t FEEL that. All you feel is despair, hopelessness and a suddenly strong urge to leave this world. You may even think about how you’d do it.

Then a miracle happens. Aunt flow comes to visit, and she is a magical cure that brings you back to being you. You think back on how you treated the people around you, the horrible thoughts you had, and you get to endure another week of cramps and bleeding with a heavy dose of guilt for what you went through to get there. Through no fault of your own.

PMDD is so severe that many women have been misdiagnosed with bipolar disorder in an attempt to find out the root of their symptoms. But thanks to the latest research, things can start to change. I’ve got to be honest, I don’t understand this stuff very much. I’m more geek than nerd, so I’ll include links below to pages that actually understand the scientific stuff.

But in basic terms, studies are now showing that women with PMDD are different on a molecular level. Women with PMDD and women without have the same amount of hormones coursing through our bodies. And during the time of the month that we experience surges of estrogen and progesterone, our bodies simply do not know how to fight back against the side effects that other womens bodies learn to fight off. Meaning there is a real, biological cause for our crazy. It is the fact that some women are biologically different and our bodies cannot handle normal levels of the hormones that we need to function correctly.

Meaning, hey doctors who wouldn’t listen, guess what? The difference is not in our heads. It is not weakness in certain women. It’s not some women making excuses as to why we can’t handle certain things. It’s not an excuse for being rude or mean. It is a very real, very scary condition that affects many of us. But now we have hope. Now all those brilliant scientific minds are taking this seriously. Very seriously. And instead of doctors throwing birth control and antidepressants at us randomly, hoping to “fix” us, maybe someday there will be a better way. Better tests, better questions and most of all, better understanding.

NAPMDD

Severe PMS Linked to Gene Network Disturbance

Mayo Clinic PMDD