Back Baby Steppin’

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This is me socializing in the park. Even my lunch dates require exercise now!

There so many exciting things are happening in my life right now. I am volunteering at the library, getting to know new people, writing more and exercising more. I have not had an episode of pain in two weeks. I am delighted. My husband is relaxed and I am making very small progress on all areas of my life. I am cooking, walking, and stretching a lot more. I am in the zone.

Something that is helping me besides being pain free for two weeks is this new deal I have with myself. If I do not write at least an hour a day, then I have to forgo my modem and give it to my husband to take with him to work. Without the router I have no internet and no TV because we have no cable. So I have nothing to research with while writing or entertain me while I clean. This is an even bigger motivator to jump start myself than the writing I am already doing. Once I get writing I get more excited about the writing. So this is just a jump start to get the fingers moving! It has worked. This week I have written every day.

I have also met my pedometer goal every day and done yoga three times. I even tried to do a yoga video called Power Yoga with Rodney Yee. Rodney Yee is a yoga instructor born in my native state of Oklahoma. (I just found that out!) He is a very handsome man who apparently only owns pants. These pants are made of spandex and are usually neon colors. I like his calm voice and dulcet tones, but I think I want to branch out. I think that I need something called Half Power because I had a lot of trouble doing those yoga moves so quickly. Downward dog –Upward dog — Downward dog –Upward dog —  Downward dog –Upward dog — Downward dog –Upward dog — Downward dog –Upward dog…sweaty sweaty sweaty sweaty but I was done when he got to Half-moon pose and fell over because my knee didn’t like it very much.  So I stopped but was proud of myself for attempting and making it about half way through. It’s been a long time since I even put in an exercise DVD. Actually I think last time I put a video in it was a VHS tape.

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Lynne my library lunch date!

I am also cooking more so my husband and I are eating fresh vegetables and fruits. I got back into making smoothies and eggs with veggies for breakfast. Leftovers for lunch and for dinner I am cooking fresh salads, veggie filled pastas and I make delicious veggie tacos.  I am not saying I haven’t had weird pizza roll dinners once or twice but I have been making great strides to getting my healthy habits back.

It feels like I am just bragging in this post but I feel as if I must after what I have been through lately. I am now looking forward to progressing but more importantly, the most encouraging development is coming back to the program feels inevitable. If I have to put my exercise plan on hold for a month because of pain and there be no doubt I will get back to it when I feel better, then that means I am officially a person who works out. It am not a poser. I am the real deal.

 

Is it Always Darkest Before the Dawn?

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Out in the city, sick as a dog

I have been sick and this is the first time in two weeks I have even opened my laptop. I am still getting over a super stuffed up nose, hacking cough, and my own brand of sickness induced asthma. It has been not so fun, of course. Something I have figured out is that being sick in a big city with no car is even less fun than normal.  The sickness was so bad that husband stayed home from work because he was worried about me wondering around the city on foot. I was dizzy and disoriented. I can only imagine because of the not breathing so well. So we walked to the doctor and spent two hours there doing a nebulizer treatment and other tests and then walked home.  Husband took care of me all week: making dinners, reminding me to take my inhaler, buying cough drops and medicine.

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I am ready for the ball

After that, to prepare for my hysterectomy I had to get an MRI. So I was out on my own this time sweating and huffing. Doing anything while I’m sick seems like an impossible task, but going to do the MRI was extremely tedious and weird. First off I walked to the wrong place, (perhaps my husband’s concern was not unfounded.) Also, I went at the wrong time. I had programmed the appointment at 4 p.m. but wrote down 900 for the address. So I went at 9 a.m. So I walked all the way there and back twice that day for no reason.  Then I put on the glorious gown (pictures included,) and they had to take my blood which is a horrible experience because my veins don’t like it. I don’t mean that I don’t like needles. I like needles. I used to get piercings. My veins elude them so they stuck me about five times and then put in an I.V. They put me in the metal tube and asked me to not move which was a minor miracle that it worked because of my stuffed up nose and hacking cough. Then as if it were a field readiness test for sick people they asked me to hold my breath for about thirty seconds at a time while shooting me with a dye that made me dizzy. I went home and slept the rest of the day.

I haven’t gotten the results because I was supposed to go in to the doctors for my biopsy and as I started to feel better from the cold I started my period so I had to reschedule the biopsy. I asked my doctor to call with the results but she hasn’t so I will probably have to wait until next Friday when they plan to do the biopsy again.  Brad says it is my ovaries fighting back because they know they are not long for this world, so I started screaming at them, “You’re going to be medical waste you bitches! You are not long for this world!!” While the past two weeks have been horrible and this period shows no sign of slowing, I am still hopeful. I believe it is only a matter of time now until I am helpful. Today I got back to my yoga and Thursday I went for a walk. I am also getting back to cooking. I am hoping the old adage is true. I hope I will see the beginning of health soon.

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?

Why am I crying?

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Thank you Iheartguts.com I am so tired of those diagrams of my innards. If I never see it again it will be too soon.

I don’t know why I am crying. It seems so dumb because I got some relatively good news. I just left the gynecologist office where she told me that not only do I have PCOS, and a fibroid on my uterus, but I have adenomyosis and possibly endometriosis. I need to have an MRI and a biopsy and then I will probably have a hysterectomy and one of my ovaries will be removed. Basically the only cure from the pain is a hysterectomy. This means that someday in the hopefully near future, I will be pain free.
That’s good news right?

So this is weird that I am crying right? I left the doctor’s office and walked to the bus stop and started crying on the way. I felt so pathetic and weird. I pulled myself together before the bus came thankfully but I’ve been crying off and on all day. I am unsure why because I’ve been hoping for this for so long. I can’t even tell you how many times I have clutched at my crotch and cried to the heavens take these blasted ovaries!!! That was when I thought it was the PCOS causing this pain, which was what my docs made me believe. This is where I believe those doctors weren’t paying much attention to me, because my new Doctor, Dr. Lee, says that PCOS doesn’t cause as much pain as I am experiencing. There were many times over the last ten years that I have told my husband that I wanted to cut out my female organs myself. I am fairly certain I came close many times. I can be determined and bull headed. I was in so much pain that I had a few moments where stabbing myself in the ovaries seemed like a valid plan to get someone to finally do something about the pain. That is how insane the pain made me.

I feel like it still is making me crazy. I don’t even understand my feelings right now. I am not unhappy that I finally found a doctor who listens to me, although rather curtly. I am not displeased with the idea of surgery.

I have waited and worked so long for this. I have had at least five of those vaginal ultrasounds, countless pap smears and exams, and many frustrating tear soaked conversations with doctors. There were two emergency room visits where I left filled with morphine that didn’t help and no closer to answers. I’ve had relatives over and over tell me to get a hysterectomy even though no doctor would agree to it until now. I have worked hard to get to this point. I am exhausted.

There is still so much work to do. I have an MRI, and a biopsy, and several other appointments. I have to prepare my house, and cook some good food to freeze, and then I will have to recover. I am right now researching the surgery, recovery times, the hospital, and the surgeon etc. There is still so much work to be done before I put this behind me. I am not done. I am far from done. It’s not like this is the only thing I am doing either. I am lucky right now because I have no job, but I want one. I want to write, teach, volunteer, and go back to school. My head is swimming with all the things I want to do and need to do.

Plus I am living in a large city I have just barely made my home with only my husband for support. My family is either in Oklahoma or Idaho. I feel very alone this way. I am not discounting the comfort and love my amazing husband has provided, but do to the nature of the problems I have been having I really do miss my female family members terribly right now. I am wondering why the hell did I move so far away??

Maybe it is the fact that not one but all of my sexual organs have something wrong with them. I mean I should have been born a man, because my body is clearly rejecting all that makes me a woman. I have not ever really thought of myself as someone who clings to that bullshit, but it is almost obscene how ridiculous it is that EVERYTHING is wrong down there. Having these organs out won’t make me less of a woman. I am not mourning the loss of my femininity. I don’t see these organs as having anything to do with how much of a woman I am. I am a woman because of the cultural significance of my outward body more than anything. I was raised a woman. I care for my family and friends as an Oklahoman woman would. Truly, I believe my actions prove my femininity more than anything. However, as a lover of gothic literature, it is not lost on me the idea that my female organs are sort of eating themselves.

Perhaps I am just used to complaining and seeing the hard times coming. Perhaps I am relieved. Perhaps it is the hormones or maybe I am just exhausted. Whatever it is, I am hopeful this is the last time I cry over my health.

 

 

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.