Endometriosis? Really?

I think this is the appropriate sentiment.
I think this is the appropriate sentiment.

It has been a long time since my mother has had to remind me of who I am. I don’t know if everyone has someone like this, but my parents are realists when it comes to parenting. They believe their kids are smart, handsome, beautiful etc. just not the most of any of these qualities. Neither of them have any qualms about telling me how flawed I am if I decide to get too big for the britches as they say.  For instance, once I was very indignantly mad at my husband and Mom pointed out, “You are not such a peach either.”

I am not complaining. Knowing where I stand is something I value. I am telling you this to say that when my parents give me a compliment, I know I deserve it. So Friday, when my Mom told me that I am one of the strongest women she knows, I know she means that. It was one of those moments where I looked inside myself and found something so deeply hidden, it is probably going to take months to dig it out and that is my indignation.

I have gotten a little soft lately. I think it is because I found love and all that bliss it contains. So this pain I have been having every month, this horrible bed ridden type pain that is making me a little crazy, I thought there would be a solution for. I was looking for an answer from other humans. I trusted the medical professionals to find me an answer and just remove this pain. It seems logical. It was blissfully ignorant, the hope and faith that people have who believe in love and such. Right? I mean that is how the world works right, you go to the doctor and leave feeling better and with hope you will feel better…yeah not so much.

I have been going to the doctor with intense menstrual pain for over twenty years. I have had a gazillion different appointments where I have described excessive bleeding and intense pain. I have missed work, vacations and other fun.  I have had ultrasounds and even emergency room visits where they pumped me full of morphine. They have told me the entire time that I have PCOS and that the cysts where causing me pain. So my last appointment at a new doctor here in Philadelphia I asked why I didn’t just get my ovaries removed if they were causing me pain. She said that sounded reasonable so she set me up with an appointment with one of the best gyno/surgeons in Philadelphia.  If you are a follower of my Facebook or Twitter feed, you probably know I have been sort of excited at the prospect of no pain. I have been daydreaming about my ovaries in a jar.

The first thing this accomplished doctor told me was that PCOS doesn’t cause the pain I am experiencing so removing my ovaries would be pointless and stupid. Well she wasn’t that rude but by the look on her face I knew that is what she thought. I immediately started crying. Why the hell hadn’t anyone told me that before? Why was I blaming PCOS for all my pain this entire time? Why didn’t any of the ten doctors I have seen for this before tell me this?

She thinks it is probably endometriosis, but will have to do tests to be sure. She was very vague about treatment. Maybe we will try IUD or to put me on a medication that will put me on a fake menopause. Neither of these things sounds pleasant or like something I want to do. She also said surgery most likely won’t fix anything.

Afterwards I was in a daze. I didn’t really know how I felt other than devastated and extremely exhausted. I had a coffee date with a friend after and she was so lovely to me, and reminded me that there was still hope with this new diagnoses and I was still on a journey to getting better. She also told me that it was okay I felt sad. This was good because the minute I got back to my apartment I called my Mom and broke down.

She was mad too. She had hoped the same things I did, that it would be as simple as removing the pain. Furthermore, she wanted me to get mad too. She said, “Cry today. You deserve to cry today, but then you need to pull it together and be you. You are the strongest person I know and I want you to talk to the doctor and tell her what you want. Don’t cry at the doctors. You are a very capable women, and don’t let anyone make you feel like you are not.”

You know it wasn’t the doctor making me feel like I wasn’t capable; it was me and the pain. I let the pain make me feel feeble and timid. I am not timid. I am a bulldozer in sneakers. My family and friends know I am not subtle. My sister told me I needed to pretend that I was advocating for her, because she knows I would be searching for solutions all over.

I would love to say that conversation gave me instant back bone and now I am researching with a resolve. I am researching.  However, I am still having a bunch of feelings I don’t understand. They range from frustration with a system that took over ten years to give me an answer, sadness that I will continue to have this pain, and anger that I still don’t definitively know anything. I am creating a girth of information and choices for me, but in the meantime, I am frustrated by the lack of information. I am re-angered as I look for answers in the chat rooms. The women there have all been ignored or told their pain either is made up or doesn’t matter. There isn’t one story I have read so far of women who were believed, cared for, and helped right away; years after years plagued by a debilitating pain and no one listened. I flit between resolved to find my answer and all these other feelings, some of them all at the same time.

That is where I am at now. I am in research mode. At the very least, I am again taking my health into my own hands and searching for an answer.

Working on my PCOS

Probably all the chemicals I have put in my body could fit in here.
Probably all the chemicals I have put in my body could fit in here.

This morning hubby and I were high fiving in the kitchen and I was yelling ecstatically “Yeah! My ovaries are my bitch!!!!”

Not even thirty minutes later I was laying on the bed wincing and crying out in pain, “Your still my bitch!!! You’re still my bitch!!”

As I write this I am blissfully pain free because I took two Aleve and a Tramadol.

See, I accurately depicted that I would start my period this morning and I did. I know, those of you who have periods are like, “Big woop, Danielle, we all do that.” My response would be, “No we don’t.” For the past twenty years, I could no more tell you when my period was gonna coming then what whining lottery numbers are going to be. Having PCOS means I don’t ever know when Aunt Irma will visit. She can sometimes leave me alone for years, only to come back for six months, or come every two weeks, or two days even; basically my menstrual cycle is totally random.

Also, there is the horrific pain, but I will conquer that next. Even though the cramps are still debilitating, the fact that I have been regular two months in a row, is astounding. Twenty years of medications and doctor’s visits have not given me so much as a step closer to regular periods. I am not blaming that all on the doctors although I will say my healthcare hasn’t at all been comprehensive until recently and mostly because I have been doing most of the leg work. I am really working hard to be informed.

I have been researching getting healthy for myself and my family. I have a vested interested in all of our hearts continuing to beat and both of my parents have had heart attacks so it is a red alert situation. Even before the most recent heart attack Brad and I wanted to go organic. Since I am in charge of the groceries now for the past three months, I have been buying strictly organic food.

I started worrying about the chemicals and antibiotics after watching food Inc and then it took three antibiotics to get rid of my ear infection. I am really of tired of ingesting stuff I don’t have any idea of what is in it. (I know there are fertilizers in the organic stuff too but I struggle to buy local as well so I am feeling good about my chances.) Since it started I have been reading a lot about how our hormones are affected by these chemicals in our food. Essentially PCOS is rooted in hormone issues.

Going organic is the only thing that I have done consistently for the past three months so I feel  that my regular periods are a direct correlation to the elimination of those chemicals. We have only gone veggie the past two weeks, so I don’t think it is that. I am not an expert. I can only tell you what I know but it seems pretty conclusive to me. I am feeling pretty amazing lately. If you have PCOS, you might give it a try. I can’t say it would work for everyone will PCOS, but it seems to be helping me.

Ill Prepared for Vegetarianism?

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Being a vegetarian is hard. I went “cold turkey” so to speak on the meat products. Right now there is absolutely no meat in my freezer. We went out with a bang. I made a delicious meal last night of fried chicken, mashed cauliflower, gravy, and some corn from a farm nearby. That was about as healthy as I could make my last home style meal.

Today is a new day though and I have to craft a meal without the crutch of meat as a main protein source. I have been looking up recipes for three hours. I made the mistake of buying a lot of vegetables that I like but not a lot that makes a cohesive meal. I have a lot of veggies to snack on like carrots, red peppers, and hummus. There is also grapes. I ordered groceries from a new delivery service and they had an amazing selection of produce that really had me excited. I also got some things I thought I might need like tahini, vanilla, and almond flour. I also had to replace a lot of my spices. I felt like I would need those in the coming weeks. I felt like I had bought out the whole store, but maybe that was only my wallet.

So lesson learned, next time I will look up good recipes and then make out my grocery order specifically off the recipes. Certain recipes are just in your blood because you have eaten them your entire life. I could not tell you how much this is frustrating me. I must tell you that my Dad hates vegetables to the point where it is almost like he is allergic to them. So I wasn’t raised on a veggie heavy diet. The extent of that cooking included a can of veggies opened into a pot and warmed on a stove. Don’t get me wrong, Mom did what she could. She grew fresh tomatoes and cooked healthy in every other way, but we were a meat and potatoes household.

Keeping healthy in my site line.
Keeping healthy in my sight line.

The point is I don’t have any experience making veggies the main event. Right now I am going through recipes to see what I can make with what I already have. I have found a recipe for peanut sauce pasta tonight, but I am sure I will be struggling just as much in the future. I am checking out some books from the library, but I am really excited that I found something today. I have to be better about the pressure I put on myself. I was watching The Closer the other day and one of the detectives is an alcoholic. He said that you don’t have to think about giving up alcohol forever, just think about giving it up today. I am heavily thinking about eating healthy today.  I found a recipe for today and even tomorrow. I am feeling encouraged. We are doing leftovers for next day so I got lunch too. Between that and my walks, I am doing great!

Positive Peer Pressure

Sights seen while walking with my honey!
Sights seen while walking with my honey!

So most of my family is buzzing with healthy ideas. My brother Matthew and I have been talking about our progress and he referred me to a documentary called Forks over Knives. I like to always listen to my siblings because they are impressive people, so that day hubby and I decided to watch it. I am not going to review the movie here, but the gist is; by eating a healthy vegetable diet you can lower your risk for heart disease and even reverse it. The statistics they give are amazingly definitive. So we have been researching and have decided to try it.

I must tell you my Midwestern roots sort of shudder in their boots when I say it out loud. My husband and I are working towards changing our diet to dare I say it…vegetarian. I cannot believe I am going to stop eating meat but it is something we are working on slowly. We are going to phase out meat slowly. The slowly part is something we realized after searching for recipes and understanding we know nothing about being vegetarian.

My friend Emily has pointed out that learning recipes from blogs aren’t always the best ways to start out because those recipes are usually the most impressive. I need to start with the basics. So I am going to first do one veggie meal a day. It is still a challenge for someone who was raised meat and potatoes style. I don’t know if everyone else has this problem but the normal protein sources that are part of a vegetarian diet I have not put into my recipe repertoire. I am researching recipes to get us on the right path.

This change in my habits is causing some disbelief from my family. We were talking about the fact that I made a veggie sandwich for dear Bradley to take to work, and how after I told him about said sandwich he declared, “But there is chicken in the fridge.” It was meant to be a story about how brain dead I was in the early morning. I had forgotten about his plan to take said chicken, but Momma jokingly said, “Poor Brad.” As if my hummus, cheese, spinach, and red pepper sandwich was something so depressing. We both laughed and Mom asked, “Does he have cash?” I said yes, and she said “Well, he is gonna throw that sandwich away.” I insisted that he wouldn’t although I was giggling at the prospect of Brad just being like, whatever, and throwing away my sandwich. I told Mom it was Brad’s idea that we start eating mostly veggie, but she was unconvinced. I said I will have him take a picture of him eating that sandwich, she said, “Don’t do that Danielle. Don’t make that man lie! He will take that picture and then throw it in the trash and then go with the guys to the roast beef shop.” I will tell you that this conversation brought me intense joy, as did the subsequent conversation with Brad about this.

His response was, “Oh sure. I can explain this to my boss. What are you doing Brad? Oh, I am taking a sandwich selfie. It’s a thing, right? a sandwich selfie?”

Brad did take the sandwich selfie at different states of eating. I was impressed at his thoroughness. I then emailed it to my entire family.

For your pleasure, the sandwich selfie:


That’s another change. I have been sharing all the healthy stuff we are doing with my family and hopefully they will with me. I am hoping that seeing that their oldest, chubbiest sibling is eating cut up radishes and sweating her ass off in the hot Philadelphia heat will be motivating and health affirming, but more on that later.

Right now, I am asking if you could give me any good, simple vegetarian meals they have made or any tips for becoming more veggie centric. I would love to know your opinion on a produce heavy diet.

Well it is not War but it is a Start: Phase 1

Picture proof of my Tuesday walk and sweaty, shiny forehead after finally ducking into the air conditioned library.

Husband and I had a meeting. We have set initial goals and decided we will set a new goal every month. First goal we set – we decided we are going to do something for our bodies every day: walking, yoga, or weights. This is the thing we have to do. In Brad’s case, he has to walk a mile to work every day, but he is going to try and go a block here or there out of the way, and he will be adding yoga and weights. I will be trying to walk every other day, yoga every day, and weights three times a week. (Husband and I are looking for dumbbells and resistance bands. I have to say it is the most inconvenient thing I have shopped for. The bad part is somehow getting them to our apartment. I know that we can use the gym in the building but I am sorry it smells like sweaty feet and old newspaper. I don’t really feel I am ready to walk fifty pounds of weights home from a store. The closest store to my house is only about a half a mile but still, I don’t think my back can take that. A weight set with shipping, whew! I am still looking, and crossing my fingers for a Labor Day sale.)

Second goal – We will not have ANY soda. At all. Tea, coffee, and water are all acceptable libations. Soda is so over. It is totally passe’ to be tugging around a Styrofoam 72 ounce cup of sugar water.  We are through with the empty calories, and the fact that any of the soda you drink with or without sugar negatively affects your bones.  I have heard it has been said, it is like pissing out your calcium. We will not even partake of soda that comes a part of a meal. No more value meals.

Which brings me to goal three – no more fast food. Admittedly, we have curtailed most of this only because fast food in Philadelphia requires walking to get to it, but there is still delivery. The delivery here, a lot of time isn’t that good. They sell the same pizza crust/chicken fingers/French fries/ etc. at many of the restaurants. Eating this fake crap is just not even worth it. If we are eating out, or even delivery it is gonna have to be the good stuff. The criteria is easy to distinguish. If you have eaten essentially good food, you’ll notice that you naturally eat slower because you want to actually enjoy the taste. It is made with things that you can pronounce and it is slightly more expensive. Giving up fast food, will make it so we can enjoy these slower food/healthy food options.

Earlier that day…more walking and more sweating. One of the benefits of Philly walks is the beautiful architectural details like this door.

Basically goal four is only real food. If I can’t pronounce it, and don’t recognize it – it cannot go in my mouth. Simple.

Basically we are becoming food snobs but in a good way. We are on the search for better, more flavorful, nurturing food. No more crap.

I am sharing my goals with everyone on my blog and in my family too. I am calling everyone to help me. Help me by telling me the little things you do to make this fight for a healthy body easier. Let’s create a healthy culture.

My Dad had a heart attack this Friday. He is alive. Thank you Lord.

The Face of Heart Disease. This could be our motivation to fight it, as if life and death wasn’t enough.

When I say things like that I always feel like I am not inside my head. Heart Attack seems like an abstract concept. Dad’s heart was blocked in two valves, one 100% and the other 95%. This is not the first time in my life in which I felt the world had stopped moving. Sometimes that is all you can do, stop your world, breathe, pray, clean until the grout in your shower is sparkling white and your walls are no longer dusty, cry, and then start the process all over again. One of the other times I have gone through this process was when I got the call about my Mom’s heart attack a couple of years ago.

We are in a panic as a family. Our patriarch doesn’t understand why all the fuss guys? I am fine now?

I won’t even write my response here…I am sure you can imagine that a tear soaked, worn out, angry Danielle bit her tongue from saying. What I will say to you is that it is frustrating when someone you love is flippant about their health. I mean it is one thing to try and fail, but it is entirely other to deny the problem so you don’t have to try. It is scary. I know, but everyone is scared.

Now is the time to be brave everyone. All of us wanting to have a healthy life, and wanting to make ourselves better. Now is the time to be brave, to want things that we never thought we would have.

How many people have denied themselves love because they did not believe they could get it? How many people have been denied jobs or promotions because they didn’t ask for it? I believe it is the same thing with health. So much of the health industry is so seemingly unattainably.

When we think about words like Diabetes or Heart Disease they can seem like impossible monoliths rising out of our bodies, impossible to overcome.  Face to face with death, we can either fight or die. While this doesn’t seem like life or death, while we might not be overwhelmed on the surface, down below subconsciously it is devastating. These diagnosis’s can feel like Voldemort is coming after you, and you can fight back, but first you have to kill all the horcruxes first.

I think those horcruxes are the emotions we feel about these diseases: dread, fear, anger, and trepidation. These things can freeze me in my tracks where I won’t do anything for days, weeks, years. I believe this happens to everyone.

How can we work through those quickly so that we can get to real fight? How can we put aside all the horrible fears? How can we work through the regret because with these diseases sometimes we feel that we deserve this? We don’t. How do we not just sit in our rooms laying on our bellies crying with dread? I don’t know. I’ve cried until I can’t cry anymore. Now, I am faking it until I make it. I am fighting the war without killing all the horcruxes first.

I am just going to figure it out as I go. I am going to start by doing something for my body every day. This is the real war. Whether we know it or not, we are at war in this country. We are at war with poor health. We should be treat poor health this way. I am going to treat this like a battle against the grave because I feel like it is. I feel like if I don’t change my ways I am going to die. I am worried about the ones I love, because if they don’t change their ways…

I can’t sit idly back on my couch anymore. I want to save my family. I can’t make them change their ways, but I can at the VERY LEAST walk the talk. I am going to war. I am storming the castle. Who’s with me?

What can help?

When the pain comes flooding in, even tranquil places like this in my mind don't help.
When the pain comes flooding in, even tranquil places like this in my mind don’t help.

I keep reading articles about chronic pain on Facebook that start…things only someone with chronic pain would know. These lists are meant to make us feel not alone. Some are also meant to help our loved ones know what we are going through. I find some comfort in that but am slightly disturbed that they don’t understand it already. This ignorance of the plight of us chronic pain sufferers stems from several issues, the worst of which is that no one believes suffering unless they can see it especially if the one suffering has a vagina. The least worse reason is that most of us suffer in the silence of our homes. For me it is because I am embarrassed. I don’t like being so weak. I don’t want people to know I can’t handle things. It doesn’t really matter why someone doesn’t believe I am in pain. In fact, it doesn’t really matter how anyone feels or thinks about my pain…it exists to me and I guess that is all that is really relevant.

It is awful coming to terms with the fact that I will be intermittently in pain for the rest of my life and there isn’t anything I can do about it.

The thing that most of those lists don’t stipulate is that this realization comes smacking me on the face over and over. There are periods, days, where I am gloriously pain free. Then I blessedly forget about my pain. I have to employ this blissful denial or I would enjoy none of my days. Then inevitably the pain returns and I am shattered with the realization once again.

It is the dashing of hope that is demoralizing, and it doesn’t just happen after a period of good days. I selfishly and stupidly allow myself to hope for no pain in the mist of the painful days too.

Yesterday I cried several times because of the pain I was going through before I broke down and took a pain pill. In the midst of the subsequent chill that descended upon me, I had hope it was over this time. I was even so bold to make plans for today: a Walgreens trip, a library trip, and coffee with a friend. Reading this I am sure you can imagine that I again woke up with pain. I will once again put off my library and cancel plans with my very patient friend.

I am tired of being patient. I am angry and disappointed once again. I can not express how angry I am. This anger is further confused and inflamed by the pain. Unless I medicate to wipe out the pain I can’t stop being angry and sobbingly feeling sorry for myself. This is compounding exponentially by the fact that I hate myself for feeling sorry for myself. The emotional component of chronic pain makes it all worse. Not only that but stress makes fibromyalgia pain worse so it doesn’t just add insult to injury but also further injury.

What can anyone say to this? What is the solution? There isn’t one. That is the futility of it all. I keep doing my yoga to minimize the occurrence of pain, which has been the only thing to help so far, but I know from my Grandma and Mom that it will never go away. What is the point of these lists for people like me, how can it really help? How can anyone else help even if they did believe me? I don’t have the answer for those questions. I wish I did. I can only ask them. Right now, I guess I just needed to get out my frustrations with its futility. Will it help to just be heard? I guess I can only see.