“You are…fat?”

kidney

“You are…fat??” she said with trepidation. I replied, “Yes, yes I am,” as calmly as I could muster. This new student at my ESL class seemed to be thinking of the right words after she witnessed me taking my blood sugar. Following that horrifying moment, another student made me proud by knowing enough English to scold her, “We no say fat. We say unhealthy.” Right after I got distracted by other students asking questions about how to say something or other. I think it might have been intentional. My students are some of the most polite humans I have ever met. I don’t know this student at all because she was new. I don’t even remember her name, but I can bet she didn’t mean to insult me. I would wager she was actually concerned about me.

I am usually like Teflon when it comes to this stuff. I sizzle when it happens but then it slides right off. I usually bristle back at the asshole who thought he could comment on my health or most likely appearance, but this wasn’t an asshole. I have to say I ruminated on it all day, and four days later still thinking about it. I keep seeing her confused face, and hear her say it over and over, “You are…fat?”

I probably would have shrugged it off but I had a horrible health week. I found out I have kidney damage. My A1C was 6.5 which is barely diabetic but that puts me back in medicine territory. I told her I didn’t want to take meds because I am trying to do things more holistically and that is when the doctor told me I have kidney damage. That’s another phrase that’s been going around in my head, “KIDNEY DAMAGE.” She later called it “low grade kidney disease.”

So for those keeping score, I now have fibromyalgia, PCOS, fibroids, adenomyosis, pelvic inflammation, diabetes, and now KIDNEY DISEASE! I know she said low grade, but seriously kidney disease doesn’t sound good. I’ve been researching it and it isn’t. I can’t make this better. I can never make this better. I can’t heal my kidneys. The damage is done. This isn’t a car, it’s my body. It’s not like I lost that new car smell. I lost part of my kidney function. This is bullshit.

There are two reasons this could have happened to me – my high blood sugar, and my excessive Aleve use. Because of the pain, I have to take sometimes four Aleve a day. Now I have to stop all Aleve which so far has been the only thing keeping me sane during times of pain (other than yoga.) I also have to take some diabetic pills and I have to monitor my blood sugar closely again.

So basically I’ve damaged a part of my body, I can’t repair it, and it’s only going to get worse unless I seriously turn it around. Which should be so easy right? Since, I’ve done it before. Okay…so I haven’t done it ever. So this week has felt pretty hopeless.

After yoga yesterday I just thought. I can only do what I can do. Ya know?

Have you received bad health news in the past? How did you deal with it?

Crash Toone

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This was one of my very high pain days! 

About three weeks ago, I had an appointment with a genetic counselor. I didn’t want to go, but I saw it as a stepping stone to getting my hysterectomy. With my fibroids and supposed Endometriosis, I thought this might remove my pain. My doctor said that she wouldn’t take out my ovaries unless I was at great risk of cancer. I can’t tell you how much that ticked me off. I was under the impression my ovaries were causing me pain. So what? I am supposed to go to this appointment to find out that I am at great risk for cancer? Really?

Well, it didn’t turn out that way. I refused to take the blood test. I don’t want to know if I am at great risk of ovarian or breast cancer. I really don’t. I also don’t want my DNA on file with some lab for them to test. The counselor told me I shouldn’t do it if I felt uncomfortable. So I didn’t.

So I went back to the gynecologist, who is also a pain specialist, who told me that there was no reason to get my ovaries taken out because my ovaries are not causing the problem. She is now telling me that I may not have endometriosis, but too tight pelvic muscles, IBS, and too much stress. Since I have heard for years that this pain is part of my reproductive organs, and this doctor’s office agreed a couple weeks before, I had a hard time believing this new information. It took her the better part of an hour and an intense examination to, sort of, prove it to me. Rather, I should say to get me to shut up and go away dismayed and disillusioned.

I walked to meet a friend who was there for me because we both knew this appointment wouldn’t have definitive answers. She and I talked and she amazingly enough comforted me as much as you can a person who is overwhelmed with emotions, and hasn’t really processed something. On the way home after leaving her I fell in a rather dramatic fashion on thirteenth in the middle of two restaurants outdoor seating. I did a slight somersault and knocked over some chairs. It earned me the nickname Crash, which I have to say I am taking a liking to. Husband says it’s shocking someone hasn’t said that before. Not only because I am unbelievably clumsy at times, but because I like to attack problems and even social situations with all the subtlety of a hammer. I think it makes me sound like a superhero Crash Toone.

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Part of the damage from my fight with the pavement

That was about two weeks ago. Since then I have been processing all this information and I have started physical therapy for pelvic pain. I have also had two of the worst weeks of this pain I have ever experienced. I don’t know if that means it is working or not. I have been on my pain pills most of the time but when I wasn’t I was crying from a deep engulfing depression. It’s been overwhelming. It has been isolating so I haven’t just stopped blogging until now but also haven’t talked to a lot of family and friends. I just had to work this out of my system.

See this new diagnosis I am holding as tentative. It requires me to go to three different doctors several times and change my diet, my exercise program, and my schedule. It is also very expensive. I could go through all of it and still be in pain.

My homework from my first physical therapist appointment is that I have to do ten upward dogs every two hours, and for three days write down my food intake and my waste outtake. That’s uncomfortable. I still have to make some other appointments. I know I should have more done but I promise you that I have been going through the worst pain in my life so far, and hopefully forever.

Last night I finally put on my big girl panties and decided to do attack this with more vigor. I am not going to be grudgingly going to my doctor’s appointments. I am going to be CRASH TOONE, attacking the pain. I am going to plan and write down everything I eat, cut out everything I need to, and do all my physical therapy. I am researching everything I can about all of these diagnoses, and going above and beyond. If this doesn’t fix me I might just have to camp out at my Doctors office until I get an answer. Crash Toone is done playing around.

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Crash Toone: Because superheroes should always have a red lip. 

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.

 

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.

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.

My Mornings

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I have been having a hard time in the morning. I am foggy, nauseous, and mostly just in a bad mood.  I have read a lot about other diabetics having problems waking up as well. I get nausea as soon as I am conscious.  I have tried eating something right away and that helps.

The true problem is that I am just not a morning person. That fact has been what I scheduled my life around since I left my parents home. I have maneuvered my way onto the second shift at every job I have worked. Seven am has always been an abhorrent idea to me. That is until my husband got this job here in Philadelphia.  He has to be there at eight thirty which means we have to get up at seven. Ugh!

Well, Ugh has been my disposition for about a month. That’s how long we have been here, waking up begrudgingly every day.  Like a spoiled teenager, I hit the snooze button over and over until my husband coaxes me out of bed. Then I slowly grope my way over to the kitchen to silently make breakfast. It isn’t until husband and I sit down to eat that my normally sunny personality even cracks through the smog of my bad attitude and the deadening of my brain.

It’s not a pleasant way to wake up for me or the ever patient husband I live with. I have for many days not even gotten out of bed until after he left. Some days I have actually gotten my husband to buy me breakfast and bring it back.

To give you some idea of how unfair that is I have to tell you Brad has been cooking breakfast for me for the past four or five years.  He just got this really good job and the deal was it was my turn to make meals while he supports me.

So I have been feeling really guilty, and I didn’t really know how to pick myself up out of this fog. I desperately wished to be a morning person. You know the one that gets up at seven with a cheer in their heart and a spring in their step.

I did some research on how to become a morning person.

I don’t often believe in self talk.  It always sounds so self help-y. Tell yourself mornings are good, they say. Put your alarm far away, they say. Now that just makes me even more ticked off that I have to fall off the bed and grunt across the room to turn it off, and it doesn’t deter me from getting back into bed.

I found a list of anti nausea food and am putting some crackers and nuts by my bed to eat early in the morning.  But the biggest thing that helped me was telling myself the night before that the next day was going to be awesome.  I planned out the breakfast I was going to cook and told myself I was going to impress my husband.  I got myself really excited at the idea of making a good breakfast and getting my husband to smile.

The next morning I only snoozed twice and then I hopped out of bed and made smoothies, poached eggs and turkey sausage. I actually coaxed my husband out of bed this morning.  I even sang. Can I tell myself I am a morning person and then become one by sheer force of will? I don’t know. I felt better.

I felt like I had single handedly conquered mornings.  Of course I haven’t.  Tonight I asked my husband to describe me this morning and he said, “Forcefully cheerful.” In other words he could tell I was really trying.  I hadn’t just conquered mornings but I think I got a little closer to enjoying them.

This development has made me realize that most of the time when I have a problem it may not be an outside force. It may just be the song in my heart and I just need to change the tune.  I am thirty nine years old and I am still adjustable.  I still need to tweak the playlist sometimes.