What Gives Me Hope

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Brad took this pic and emailed it to me saying, “My wife is so pretty.”

Today was a very good day. I woke up with no pain, husband made my favorite breakfast, and I got to volunteer with full energy, and then walked home as if I hadn’t a care in the world. It was one of those days when I have felt extraordinarily lucky to be alive because I have no pain. If I hadn’t had all these health problems I don’t know if I would feel this blessed, or maybe I am just extremely smart.

I don’t mean to brag, but I believe people who can see the good stuff, the sometimes referred to silver lining, are the smart ones. You know how they say that most comedians have gone through a dark time. I know that makes sense. Sometimes we have to go through the fire to appreciate the soul soothing rain. I know that I have read other people with chronic pain talking about how blessed and lucky they feel on the good days. It is just natural to soak it up, tilt your head to the sun, when you live in the shade most of the time.

Right now I am typing but also writing letters to my family and dancing to a Pandora channel filled with Korn, Metallica, and AC/DC. That’s my feel good music. I think that any day I feel up to dancing is a good day!

I wish I felt this way every day. I wish “Dirty Deeds, Done Dirt Cheap” could help me get out of my chair and giggle and dance when I am doubled over in pain, but as good as that song is…

I know my family and friends have been worried about me. It is hard when they are so far away and they call me when I am in agony or what’s worse when I am on drugs that make me talk like Kermit the Frog on drugs. It can be excruciating to watch your loved one go through pain. I know because my Mom has chronic pain. She is strong and hides it better than I do, but she is in some form of pain most of the time.

Going through the endometriosis and adenomyosis has helped me to understand how it feels to be her. Even if you are surrounded by tons of people it can be lonely, because no matter how much you explain it…no one will know what it feels like to be you.  Also, they may not always believe you are in pain or to the extent you are and that is isolating and insulting. The cool thing is most people will believe you and those people might ask what they can do, and I have some suggestions that I might have wished for if I knew how much it helped. Now I know how to help my Mom because someone helped me.

My husband has been so awesome.  Being in pain, you would think, would make me want to be rubbed or massaged, but it hasn’t. I just want to be held. I just want two arms around me, and his strength and presence. I don’t know if that what everyone wants, but that is what I want from my husband. He holds me and I remember he is there and I am not alone.

Also when I neglect something because I have been curled up like a rolli polli all day, husband doesn’t even skip a beat, he says, “Of course you didn’t do the dishes/laundry/inane chore because someone was stabbing you in the ovaries.” Small tip here for those husbands and wives who think it’s understood. It’s not. Say the words.  We feel guilty, and shitty, and useless because of the pain. When you say the words, “Of course I didn’t expect that,” it helps and relieves so much. Absolution is a powerful thing.

He also helps me have things to look forward to. He makes plans for the future with me, like dates and vacations.

Distraction from the pain is essential. My husband entertains me with reading material, music, and my favorite action movies.

Friends and family also distract me. When I start moaning and groaning about my horrible life. It is wonderful when they listen, acknowledge how shitty the pain is, and then distract me by asking me about something else in my life. If then they transition to a funny story about themselves or even distract me by letting me help them with a problem that is awesome. It really helps to stop marinating in my problems and usually that is the only thing that kicks me out of my grief – hearing someone I love’s problems. I love my friends because this is what they do. They show me I can handle it. While it might not be dancing to AC/DC, I usually leave the phone call giggling and feeling blessed and that is what I need more than anything: hope. I hope for the good days. I hope for friendship. I hope for more laughter and dancing.

“Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.”
– Thich Nhat Hanh

For those of you who also have chronic pain what helps you? How do your friends and family help? What do you wish they’d do?

The Ocean is Worth It

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We were right there in the sea! 

Have you ever gotten off the wagon? It’s not easy getting back on. Hubby and I went to Cozumel, Mexico for our honeymoon. While there we enjoyed the snorkeling. It was the most beautiful, serene, exiting time of my life. If you have never been, what you do is basically float with your head in the water and have a tube in which you breathe into the open air. The minute I put my mask into the water, I was in another world. A world with no sound, beautiful shades of muted blue and sand, and exotic fish I would have never had the chance to see: It was akin, in reverence, to walking on the moon. Had I the capability to talk I would probably have gasped audibly but I had no medium to express my awe.

We floated all the way out to the buoy before we came up out of the water and then swam slowly back. When we both popped up near the ladder to go back up to our hotel my husband said, “I think we were made for this!”

I giggled and said, “Two chubby people floating in the ocean, who would have thought!” The only downfall from this blissful foray into the ocean was climbing out of the water onto dry land.

I had the flippers still on, and I had to climb up this steel ladder, much like a ladder out of one of those above ground pools. Except, this ladder is halfway in the ocean and covered with slime.  It took several attempts to get up the three steps to finally reach the platform. My legs were a particular form of Jello that made it gut wrenchingly hard to get out of the water at all. My feet kept sliding off and I would plop down into the ocean time and time again. I would then have to collect my breath and then lift myself out of the ocean again and again.

The platform was half out of the ocean. The waves hit the large cement platform most of the time, so it too was covered in slime, but this didn’t stop me from laying down like a beached whale to catch my breath from the physical exertion of pulling myself out of the ocean.

That is how getting back on the wagon feels. The exertion of overcoming the doubt in my belly, the stiffness in my muscles and the weakness in my pallet can sometimes leave me beached on my bed with doubts of my success. I came back from vacation and was sick so my eating habits were atrocious and I didn’t exercise for two weeks because I was extremely sick.

Last week I was getting back to my yoga, walking and veggies. Before my fall off the wagon I had only been vegetarian for about two months. Grocery buying and recipes weren’t cemented in my mind so I again had to reacquaint myself with what to buy and how to cook it. I only walked a mile that first day, and I was up to three miles before. So my one mile left me aching and sore like someone had beaten me with a baseball bat. I was a whining wimp.

I was disheartened but Brad pointed out that I was just getting over being sick and having my “Aunt Irma.” These assurances made me feel better, but I also realized that I had gotten back on the wagon almost like it was second nature. I didn’t think about it as if it were a choice. I just did it. I never stopped doing yoga except when I was sick, and even then I did it once. After I got better, I got the right groceries, and I started walking. Done. No hemming or hawing. I didn’t have to think about whether or not I was going to exercise or eat right. I just did it.

I guess I am just gonna have to remind my body that this is the way life is now. I am a healthy person, who does healthy things. That is who I am now. I climb up the ladder. I will probably be climbing that ladder my whole life, but more time in the ocean is worth it.

There is such a thing as helping wrong, or as my Mom liked to say, NOT HELPING!

I have a beautiful young friend that won’t go to the doctor because she is afraid they won’t do anything for her other than tell her she is fat.

I will let you sit with that for a minute. Yeah, truly soak that up. Because what fat person needs someone with a medical degree to point that out. As if our culture doesn’t already stigmatize us to the point of brow beating it into our heads, but now that a doctor says it…

There are so many people that claim they are doing what is right by telling fat people to lose weight. I, as an official fat person, want to stand up and speak for all fat people right now and tell you to not do that. Admittedly if anyone could talk about another’s weight it would be a doctor. However, don’t talk to anyone, not even a young person with judgment and announce that they are fat as if that is the thing causing every problem. An ear infection can’t be caused by being overweight. Believe it or not doc, there isn’t an overweight person in this universe that isn’t aware that they are overweight.

Let me assume for the moment that you are really concerned with my weight. You are desperately trying to save me and you feel that the only way you can do that is to tell me that I am overweight and need to lose weight. You feel the only way for me to be healthy is to do so. I get it. For me it is true, I need to lose weight so that my five three frame can feel better. However some fat people are still healthy. However, that still isn’t the point. There are also many reasons why someone is overweight. Unless it is a health reason, nothing you do is going to change that.  So the shaming of a patient is not necessary. Do you understand?

Maybe you believe that shaming them will cause them to lose weight. Many times and many ways that it has been expressed and studies have come out that say THAT IS JUST NOT TRUE. Shaming people doesn’t help them lose weight.

You know what sucks is, it may not even be the doctors fault. It is probably a symptom of an intolerant society that refuses to actually take the time to be empathetic.   If you have been on the internet at all you have probably seen the video from that Canadian comedian talking about fat people. I refuse to write her name because I don’t want to give her any more hits or any more publicity. Let’s be honest: I struggle to forget hateful people exist so I definitely try to forget their names.  It is intolerance such as this that encourages fat people to be ashamed. The more people act like this the less likely people will get help with their obesity. When you shame someone they hide. When you shame someone they shrink. This is your goal. You are hateful and I hope that someday you will see what you have done and you will change.

Empathy is the ability to understand and share the feelings of another. I wish that more people had empathy. Not just for this issue but for every issue. I think that this is possibly the most important thing we should teach each other. I also think that the minute you cannot empathize with a certain part of society, you should shut the fuck up about it.  If you can’t for the life of you figure out why someone would be fat, then shut the fuck up until you do. BECAUSE YOU ARE IGNORANT! Struggle to figure out a realistic not hateful reason. If you can’t then – don’t speak – because all you are doing is making the problem worse. Stop making it worse. REALLY. STOP. Please. Stop.

I am so tired of my family and friends being ashamed or saddened by your ignorance. As a community, we are failing our fellow humans.

There is a girl who is only three years old diagnosed with type two diabetes. Her parents I am sure probably were just ignorant to how to eat healthy, and how to take care of themselves. So that poor girl has to live in a society that hates her, and makes fun of her. Some day she is going to want to change to take care of herself. Do you know how hard it is going to be for her? When all she has learned is to take solace in food, she is going to grow up in a society that is relentlessly finding fault in those who do so. Her friends will make fun of her, the media will vilify her, and doctors will chastise her.

That is just the support a young person needs to get better, right?

Now, I am going to go really radical. We need American women to have pride in their bodies, not only the ones that have your standard of beauty.  Our bodies are magnificent in all sizes. Our bodies are works of art that move. We rely on them every day. We must appreciate them; love our bodies, in order to live a healthy existence. We also need good self-esteem to be happy. There is no reason not to love our bodies. There may be things that need help, or maintenance, but it is not something to hate. Stop contributing to these young people hating their bodies. Just stop.

The Good News

This is a day I was super happy. Swinging with my nephew. (Had to cut him out of the pic, that's an internet no no.) I am almost this happy today.
This is a day I was super happy. Swinging with my nephew. (Had to cut him out of the pic, that’s an internet no no.) I am almost this happy today.

September of 2013 I was diagnosed with diabetes. I was prescribed 1750 mg of a drug called Metformin and a Victoza injection every night. That day I cried on the floor with my husband looking on helplessly. In the two years since, I have gone through so much pain and setbacks. I have quit my job, my Dad had a heart attack, I left the friends and family I love so much and moved across country. It has been a really hard two years. Between the PCOS and Endometriosis, I have been in pain, depressed, on pain pills and frankly fed the fuck up.

Slowly I have been trying to take control of my health. First, I started eating all organic about three months ago. I have learned about all the chemicals and antibiotics they put in our food, and how cruel they are to animals in industrial farming. I have wanted to vote with my money for a long time, but finally put that into fruition three to four months ago. An amazing side effect of this choice is my PCOS symptoms have lessened. It was surprising but also very motivating, and so Brad and I decided to take it further. About a month ago we went to a mostly vegetarian diet. Ninety percent to ninety five percent of our diet is meat free.

I went to my doctor’s appointment last week, at the time I found out that I had lost twenty-nine pounds in just a month and a half of my last appointment. This is really awesome, but not even close to the best part. This morning my doctor called to give me the results of my tests. I am overjoyed with the results. I now have the A1C results of a pre-diabetic, not a diabetic!!!! Hard work pays off!  I am not out of the danger zone yet. I doubt I will ever be out of the danger zone truly, but for the first time ever…my numbers are going the other way!!!!!! I am only taking one Metformin now and no Victoza. My doctor wanted me to take two but said it would be okay if I waited another three months to see what I could do in that time to get my blood sugar down.

I have three months to get my sugars down .2 points in order for my doctor to feel good with my current medicine regimen. So that is where I must start. I can do this! I am of the fake it until you make it camp so I say that a lot. However, for the first time ever, I believe it. I am so happy that the choices that I have been making are finally the right ones. I feel like I should celebrate, but I will wait. I have many more meals to plan, and miles to walk before a PLANNED celebration. That’s how I do things now. I plan my indulgences. I make good decisions. That’s me, controlling my destiny over here.

Okay, so I might be having a mini celebration in my head which is pretty powerful these days.

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.

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:

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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.

So Far it’s Working!

One of those meals I would be ashamed to write down.
One of those meals I would be ashamed to write down.

I am very pleased with myself, because I of my new daily goal system. I may not be a morning person. Heck, I may never be a morning person, but I may have figured out a way to get things accomplished anyway. When I am productive in the morning it makes me feel good the rest of the day. Last post I told you that I have started to make lists at night. I write down what meals I am going to make, and what goals I have. The purpose of making the list at night, when I have the most brain power, is so in the morning I don’t have to think about tasks or the order of those tasks. I don’t get overwhelmed anymore by my hazy morning brain. It has been giving me just enough clarity to get me by. So when I finally fully wake up around eleven a.m. I have some tasks already done, which is encouraging.

There has been a really great side effect of writing down all I have to do, and what I have done. I have been journaling how I feel every day because I wanted to know how this was working. It was like a science experiment. I have realized so many things as a result.

The first one is that I realized I have more good days than bad. When I feel bad, groggy, lethargic, it is like thinking through a haze. Lately I have been thinking that my life is filled with those days. Between the fibromyalgia and the soreness from exercising, I thought pain was what my life would be like now.

I had about four days in a row that I felt pretty amazing when I started keeping track. I was feeling energetic and thinking clearly. It was pretty good and I thought it might be because I was really paying attention to my feelings. Also I was eating well, and getting exercise because it was on my list. I was really happy that my list was successful too.

I don’t know why but slicing words in half is so rewarding! Seriously when I cross stuff off my list I get a real high. Does that make me a weirdo? Maybe. However, it is also making me very happy so..

Something else I noticed is how awful I felt when I ate something horrible. I was craving some junk food and when I ate some “not so good for me” Mexican food one night, the next day not only was I bloated, I was lethargic and my body ached. I don’t think I would have even noticed that was the cause had I not been writing down everything I ate and how I felt.  I always understood that fast food could give me indigestion or that extra bloat, but I didn’t realize that because of one bad meal, I slept badly and so the next day I was seriously off my game.

I think that is part of the reason that I am so horrible at losing weight sometimes, because I don’t notice how bad food makes me feel. I don’t know if others are as oblivious as I am, but I think that not only writing down what I eat but how I feel is helping me see what I have been missing for years. I think I am different in that I don’t really notice what food is doing to my body. I am teaching myself to be more in tune with how I feel and what I need to do to fix it.

This is making food choices and exercise easier because I understand the repercussions a little better. I am excited that I am making a little more progress on my road to being healthy. I guess it is super healthy to at least know how I feel.

I am oblivious about how my body feels so often. If I have a goal, I can work through pain and hunger without feeling it. I have eaten crappy food before and I know it must have made me feel sluggish over and over but I didn’t notice it. At least, with my new plan I can get on top of that now.

Not only that, I have been writing myself encouraging things. I know that sounds corny but I am really liking having this way of checking up on myself. It is both an efficient way to keep track of how I am feeling and what affects my feelings, but also a way of encouraging my efforts in all areas. At this point, I have to be excited about anything that is working and providing more stability in my life.