“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?

If I Can Have Less Stress Please

Before last year I worked in the customer service and sales industry my entire life. There always seemed to be not much to distinguish which came first: my foul mood or my cranky customers. Did they give me a foul mood or are they cranky because I am in a horrible mood? I feel like that is representative of life in general. I want to believe that if I put out goodness I’ll get back goodness, you know, the whole Karma concept. However, I have been thinking even further that when I put out gratitude and good vibes I feel them more in my soul. Maybe, fake it til’ you make it?

With fibromyalgia and the tense pelvic issues, I am supposed to be stress free. That can be one of the most important things when dealing with chronic illness, which to me feels very ridiculous to me. Most people can’t be without stress. Life can be filled with extraneous stress that I can’t control. Also, what a luxury is it to have a disease that requires me to cut out all that is stressful in my life? I come from a long line of working people: fire fighters, truck drivers, oil field workers, and stay at home moms. These are people who had no time to complain or feel over stressed. It is a tradition of self-sacrifice mindset I am working against. Physical and spiritual toughness is something valued not just in the culture I came from but all over. It is hard not to feel shame when I need down time or to take care of myself in seemingly extravagant ways. If I didn’t have these health issues I am sure I would be just like all the other strong Oklahoma women, who soldier on through all sorts of stress and against all odds no time outs to speak of, but I do.

I have no choice. See if I have too much stress or over exert my body I end up in debilitating pain. I have fibromyalgia which knots up my muscles so much my doctor called them waves, because they feel like waves to the touch. When they are knotted like that it is hard to move my limbs. Also with more stress this pelvic problem gets worse so I am doubled over in pain. So I am far more productive if I don’t take in stress. I am more productive over all if I take breaks. To that end, I have to embrace this new Oprah- Zen – hippy-fied- mindful – self-care mindset, and I don’t have the luxury of feeling guilty about it anymore. I must embrace it as if it were how I was raised. So I thought I would share some of the things I am doing to embrace my new more stress free lifestyle.

  1. I don’t talk politics with people who yell. Actually, I don’t talk to anyone who yells. I just can’t deal with that anymore. Passion can be portrayed other ways. I’m just done allowing that in my life. I’ve learned it’s not productive to talk back when people are that upset.
  2. I don’t watch the news. I know that is a horrible thing to say but I have the internet. I can read. If anything big is happening in the world I see it there. The news is always bad. I don’t want to constantly be upset about things I cannot change. So many times I take the news into my heart and it stresses me out. I know enough trust me. I get the news from places where people write thoughtful discourse. I research candidates for elections and when I have a chance to vote I know how to get informed.
  3. I cultivate my social media feeds to be stress free. If someone is spouting hateful stuff I can’t listen to it anymore. I have added a lot of people who inspire me; people who are general trying to recognize what is good in our life. Facebook is less good for this. On Facebook I am friends with everyone, but I have chosen not to have certain people’s posts go to my Facebook if they are usually political and usually mean.If you would go through my Instagram feed however, you would think I am an extremely cultured and calm relaxing person. I follow many yogi’s, body positivity advocates, and nature lovers. I also follow National Geographic, NASA, Bookriot and DailyOverview which are amazingly insightful and beautiful. I love being able to view the gorgeous pictures and read about people all over the earth trying to live better lives. Everything is beautiful on Instagram. Isn’t that the point? I don’t really get Twitter. I just try and fill my feed with funny people there.

 

  1. I’m also trying to recognize what is good. I am trying to everyday be more grateful for the life I do have. It starts with the little things. Instagram is a great place for this. I take a picture of something and write why I am grateful. It makes me feel good to look back on my feed when I am having a bad day. To remember what had me so tickled the day before.
  2. I am embracing this mindful thing everyone keeps talking about. When I am with my husband my mind is fully with him. When I am walking down the Philadelphia streets I am embracing and now fully becoming part of the crazy. I am enjoying my walks, looking at all the people and dancing at stop lights…yeah I am doing that. When I am doing yoga, I am listening to my body more deeply every time. I am also making a show of most things. I have dinner by candlelight. I sometimes even have breakfast by candlelight because it makes me feel special. Actually, I really like candles so these days I am using them a lot. I am in a dark room right now, typing by candle light and laptop screen! I am trying to make life as pretty as I can. It might sound superficial but it makes the minutes better. Why not?
  3. I’ve added meditation to my prayers, sometimes guided sometimes not. It’s helped me slow down and really feel blessed, even when I am in pain. Something I am learning with yoga, meditation, and prayer is that my body, my mind, and my breath are all interconnected. If I slow and deepen my breath then my body loosens and my mind is more clear.

Is there something in your life that you have changed in order to take the stress off yourself? These are just a few of the things I am doing. Is there something you do that makes you feel better about yourself and the world? Please share. I need all the help I can get. I am guessing we all do.

First Step – Research

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My old treatment plan – bed and pain pills.

I’ve always been a proponent of learning. Since I was wee, I have loved reading and considered it power. My earliest dreams were to get out of my small town and experience more of the world, and my immediate answer was to educate myself so I could have the money to do so. Education and reading has always been my most valued tool. Which is why my inaction in helping myself, health wise, should have been puzzling.

So often doctors counsel us to not WEBMD ourselves. Don’t Dr. Google they say. However, what is a patient to do when doctors don’t listen, or maybe they do but don’t have the answers? I’m not saying Dr. Google is the most reliable source of information, but there are sights that service specific ailments, and are manned by reputable sources and there is the library.

A doctor will see us fifteen minutes every couple weeks IF we are lucky enough to have insurance. Even if they know what’s wrong with us, is that really enough time to tell us all of our options for treatment or even how to enact that treatment. I have spent more time with personal trainers, farmer’s market proprietors, and house cleaning people, and spent less money on all of those services. Is it sad that I found out more and had a longer conversation about where my peaches were grown from the farmer’s market proprietor than what it means to be diagnosed with PCOS from the proprietor of my healthcare? I’m not saying that my doctors are bad in any way. I have loved my general practitioners back in Boise and here in Philadelphia. They have my respect and I feel I have lucked out. Still, I feel like there is no such thing as comprehensive medical care. I am saying that the system is wrong and the only way to combat that is to educate myself.

Sadly it took me too much time to realize that. I have just taken what doctors have told me and done what they have asked and that is all. Total trust and reliance in the medical profession has been my go to for far too long. I have been given many diagnoses in my quest for pain relief: PCOS, endometriosis, adenomyosis, fibroids, and dysmenorrhea. (The last one I believe is just a bullshit excuse not to do anything about a woman’s pain.) I was told the doctors recommended course of treatment and I followed it, but only their course of treatment for about ten years. I listened patiently and did what I was told. There are many social cues that tell us to follow what the doctor says. I guess that is appropriate because of all their education they deserve respect. However, there should have been a point in each of those diagnoses’ which as a patient I took responsibility to be more educated and this year I have. Let me say, it has made me feel better.

In my defense, it has been hard before now. I am extremely lucky in that my husband is supporting me right now. My number one responsibility is to get rid of this pain. While it is still not easy to read books, scout message boards and research web sites while either on pain pills or in massive pain, it is better than while working forty or more hours a week. However, I am working toward a better life none the less. I have been researching so much my physical therapist may just learn a few things from me.

My plan is to become so informed on all my diagnoses’ that there isn’t any course of treatment I don’t know about whether western medicine, eastern medicine or natural remedy. This has been the best thing I have done to make me feel as if I have power. My library card, my laptop and I are a powerful trio that has provided me with many answers.

My newest diagnosis is that I have a too tight pelvic floor. This is a fairly new field- pelvic physical therapy. I was told by a gynecologist here in Philadelphia that it has only been available in maybe the past five years. So when I feel pissed off that no one realized this was my problem until now, I must understand the science wasn’t there. I have read a couple of books, countless web sites, and watched many hip opening, hip stretching videos. I have met with my physical therapist twice who has examined me twice. My therapist gave me one exercise to do every two hours. So far this is what she asked me to work on. I have done that but I am also doing about twelve more stretches as part of my everyday yoga routine. I am keeping track of my diet and how it makes me feel. I am reading up on nutrition and supplements for IBS which is related to the pain. I am also trying to work on my related fibromyalgia and am looking into getting a hysterectomy to take care of my “dysmenorrhea” AKA painful periods because I believe they caused this problem in the first place. I am building my own comprehensive care.

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My new treatment plan- laptop, Nook, yoga mat and notes. 

This week is the first week in years I have gone an entire week without one single Aleve or any other pain pill. It is the first week this year I haven’t needed something heavier than that. I have hope. If all my research has done is give me the fallacy of control, then right now that is enough. More than that, it has definitively made it so that I can make more informed decisions when the doctors give me a choice. While I have to understand it is because of my new cutting edge pain expert gynecologist and this physical therapy, I also feel a good part of the solution has been my determination and my library card. I’m in charge now.

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.

 

I’ve learned my lesson????

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A picture from the longest walk I’ve taken so far. I hope I rebound quickly so I can get back to this length.

I have been very angry. The kind of angry that just has to burn itself out because it has no release valve. I know that God is teaching me something I don’t fully understand, and I can’t promise it won’t be the last time I have to learn it. Over and over again I am reminded that I have no control over certain aspects of my life. I have no control over my uterus and ovaries and their near constant assault on my life.  I have no control over my doctors and their ability to relate to how much pain I am in, and very little control in what steps they will offer to relieve this pain. I have no control over how my loved ones react to my inability to accomplish my responsibilities. Worst I have no control over when the pain comes so plans are almost near impossible. I’ve been stewing on these things because I’ve not only been plagued by the normal endometriosis and adenomyosis pain but I got sick with pneumonia for a while. When I was in pain and also sick, I had time to soak in my anger and sadness. I didn’t have a lot of brain power to tell myself how lucky I am or figure out a way to make myself feel better about my predicament.

Sadly, my anger lasted a lot longer than the sickness. I get a little unreasonable when I am stuck in 700 square feet for more than a month. The only place I could go was the doctor’s office, and of course that was dreary. Also, coming out of one of these episodes feels like recovering after an ugly storm hits. Luckily I survived but now I have to rebuild. Working in a creative field takes a certain frame of mind, and the intermittent pain interrupts the process because I can’t think. So when the storm clears I have to get back my mojo so to speak. Not only that, but I have to go back and reread what I previously wrote and think about how to continue from there. The really messed up part is just when I am ramping up to start writing again, then I get another tornado of pain.

It is a mad rush to get up to speed and then try to make progress in all areas of my life. I have been trying to lose weight for years and that is another problem. I have been doing yoga and walking, but after this episode I had to start all over. I was up to three miles three times a week and three yoga sessions. After the episode I had to start all over and was having trouble doing the seven blocks to the library and the twenty scant minutes of yoga. It is like my body resets back to slack ass mode as a default.  My lungs get smaller, my legs get weaker, and I lose all the stretch I have gained in my yoga practice.

I am thinking about how often this happens to me and it still grates on me.  I know I am lucky. I have a great life other than this: a loving, fantastic and sexy husband, a deeply close lovable family, and friends that would give their ovaries if it meant I’d have no more pain. Bitching about this part of my life doesn’t feel right somehow. I feel guilty for being so upset, but a friend set me straight.

It’s okay to mourn not just for the loss of progress, but the lost time in my life. I miss out on time with all those people I love, and joy and discoveries while I am in so much pain. It isn’t just the progress I am making on my goals to be regretted; I am missing valuable experiences and moments. Time I won’t get back. I wish that I could just bounce back from these episodes as resilient as my fellow Oklahomans do after their storms. A high expectation but I still wish I could be stronger. What I wish is not really relevant because I still have to figure out a way to move on.

Unfortunately that means that I need to allow myself to just be upset so that I can move on. If I don’t just realize that I am going to have these feelings and not feel guilty about it then I can deal with the feelings and move on. This is my reality for now… Mourning it is okay. Feeling shitty about how my body has rebelled on me is natural and inevitable. For now I will have to just realize this is my life now. I will be going through this over and over again until I get help. I need to go with it and realize that rebelling against my feelings is just a waste of more time, and beating myself up about my feelings only gives me another reason to feel bad.

Part of what I am learning the more I go through this process in culmination with more and more yoga is how to be more kind to myself. Regretting that I am not stronger or what I have or haven’t done is not only a waste of time, it is mean. I am literally being mean to myself. It is like self-torture akin to pushing your own cuticles back but more insidious. I am as strong as I need to be to live and to get back up after being down and out for a month and that is a feat in itself. As a woman I was taught to be durable, as an American – resilient, and as an Okie – never to complain but sometimes those three things together make life harder than it is. Sometimes misery needs to be vented and recovery time taken. Rather than over and over pointing out what I can’t do or what qualities I like, perhaps it would be best to acknowledge how hard things truly are and that surviving is enough. My husband says, “Hey, you bled for a month and didn’t die-that’s extraordinary.”

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Seeing the quirkiness of Philly is always motivating to move more.

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?