Can Fibro be funny?

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It is really cold here. I have to bundle up to go to the Physical Therapists office.

This morning I was heading out to the physical therapist’s office for my noon appointment when I got a phone call. I had already done the necessary checklist: appliances turned off, clothes in their proper places, face made up, hair done, keys, vapes, phone etc. I double checked all of those things because my brain was feeling asleep. You know that feeling where you haven’t gotten enough sleep or you haven’t eaten? When you have fibromyalgia, they call it fibro fog and it can happen even after eight hours and a full protein filled breakfast. So, it’s sort of random.

Then I got the phone call. While talking to this person I closed up the apartment and walked to the elevator. When we got off the phone I ran back to the door and checked. I hadn’t locked the apartment door. I locked it and then walked two blocks to the bus stop. As I was walking up, I panicked. I thought Did I bring the bus tokens? I walked quickly to the bus and took off my backpack and put it on the bench to search. As I removed it, I noticed my shoulder felt weird. I reached up and there was a zip lock baggie underneath my bra strap.

Okay I know that sounds weird, like I was rolling on a bed of zippies and one just got stuck, but no. I have an icepack that started leaking so we put it in two ziplock bags. I stick it under my bra strap because my shoulder swells up for no reason. So I have to put on an icepack every morning. I asked my doc about it, they have no idea. So I took off the ziplock and found the tokens in my book bag. I have no clue how they got in there. I mean I must of put them there but I don’t remember. I sighed in relief and slumped down to wait for the bus, but I couldn’t remember which one so I asked the next two buses, “Do you go to thirty seventh?” Finally one guys said, “No you want the twenty one.” After I was on the bus I remembered I could have just looked it up on my phone and I was going to thirty eighth.

Just as I was coming to this revelation, husband texted me, “Did you eat?” I said, “Ummmm….no…I forgot.” Then I was thinking, dang it, I wasn’t hungry until he said something, but my appointment was at noon so I had no time to get anything.

I reached my appointment desk and said, “I have an appointment with Melody. My name is Danielle Toone.”

She replied, “Her name is Melinda, right?”

I said, “Yeah, what did I say?”

“Melody.”

“Oh, sorry.”

“Also, your appointment is at 1:00.”

Once I was down in the restaurant sitting at the table free from any more decisions I thought about the fact that before fibro I would have beaten myself up for days about all of these mistakes. I just thought I was ditsy. Nope, I just have episodes of dits, do to that fickle bitch fibro. Don’t get me wrong Melinda has been the most amazing medical professional to me so I feel bad about messing up her name, but I know why it happened and it’s a relief. I’m not mean spirited or an idiot. That is a relief. Sometimes I can make people laugh with my stories and that is fun too (comic relief.)

I am just now getting into fibromyalgia social media to notice the influx of other people who suffer from this phenomenon. I am an intelligent women who is struck with momentary loss of brain. That’s all. It is horribly inconvenient, and mildly embarrassing, but at least I know what to call it and it’s only temporary. I think we should call it #fibrofunny instead of #fibrofog. I much more prefer to think of it as something that doesn’t change me. Fibro fog sounds like something that is debilitating and blinding. I want to be able to say Well this just happens and laugh it off. So, I have fibro funnies. That’s it. Then the next day, or even later that day I am back to be the smart, sexy friend you know and love.

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If I knew anything about street artists, I would tell you who did this, but I love it.

 

Reaching for Stability Inside

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The sign at my new favorite coffee shop

 

In Boise I was surrounded by people who were more introspective than myself. I loved listening to them talk about their beliefs, convictions, rituals and practices. I grew up in the church. I believe in God with all of my being but I don’t practice my beliefs that much. I mean I pray. In the evenings I thank God for my loving husband, family, and friends. I then talk to him about what’s going on with me, like I would a friend. That is as far as I have gone in the past twenty years.

I am a Christian but I have been disillusioned with Christians lately and I think that has made me resistant to the rituals surrounding my faith, like going to church and listening to preaching. It’s been absent in my life for a long time. I think that I have been missing it without realizing how much.

Lately I have adopted some new spiritual practices that I have been finding comfort in and I believe have strengthened my belief in a loving God. I am protecting those parts of myself that I had given away to other goals. I have realized a need to pray deeper and to experience more calm and stability that a spiritual practice can provide. The interesting part is that most of the ways I am practicing, while also give glory to God, don’t come from the church or the bible. These are things anyone can do, and they could possibly help anyone feel more stable and grounded in these tenuous times.

I first learned about mindfulness from the book “Living Buddha, Living Christ” by Thich Nhat Hanh. The book was an interesting read because there are so many similarities between the Christian belief and Buddhism.  I recommend it to anyone because it is a good read and not too touchy feely. It is interesting. Of course, the western world is embracing mindfulness by the droves now. I have been submersing myself in it while doing yoga and meditating. I have been listening to my breath and trying not to think of anything else for at least thirty minutes a day. I have never been one to be mindful before. I am known for doing several things at once. I enjoy multitasking for the most part because my mind moves that fast naturally. I didn’t say it thought great things, just that I think fast. It is my gift. However, even cheetahs rest sometimes.

There are so many articles on the health benefits of meditation that I won’t talk about them here; They claim everything short of growing a new brain. I can only tell you what it does for me. It helps me to slow my body down. The connection between my body and my emotions is strong. So if I can calm my breath down. It moves throughout my body. Taking deep breaths involves using all of my thoughts and it really does translate to all my limbs. Seriously, try it for like three minutes. I know that I didn’t believe it, but it really does calm me down.

It also calms my mind because I focus on just my breath, and ignore everything else. If a new thought comes I just ignore it. I don’t think of nothing because that would drive me crazy. I haven’t gotten that good yet. I have just been concentrating on my breath, and this thing they talk about where you breathe through your limbs. I know, it sounds hanky right? It really works though. You take an inbreath and picture it going to your arm (I know that isn’t how biology works, but just picture it.) Then when you breath out, you imagine that arm relaxing. If you do that for your entire body. I promise you, you will be goo. Complete and utter blissful goo where ever you are. Sometimes I do it before bed, after I pray and I am telling you it is so relaxing I just fall asleep.

There are meditations on a free ap called insight timer. All of them are good but look for the ones that are described as a body scan to walk you through what I am talking about.

The other practice I am adding to my life is to use affirmations every morning. I’ve found it is really helping me with my life because I have been so down lately. I don’t know how it will work during my dark days because I haven’t had any since adopting this practice, but so far it is helping me to be more focused. Affirmations or Intentions can be anything but I have been using three so far.

  1. I will honor God with how I care for my body because it is the temple of the Holy Spirit. — That one is from 1 Corinthians 6:19. I like it because it motivates me to take care of my body and my mind. It reminds me that taking care of me is important enough to make a priority. I, like most women, usually put myself last on the list of to do’s for the day.
  2. I will have the courage and tenacity to create art — I have been doing this so I will be fierce in my writing. I think any kind of art takes courage because it is hard to put your ideas out there. I need to have more tenacity and not get discouraged when I get something wrong. So, this intention is important to me, to get me to the computer.
  3. I will strive to love actively and deeply — This one I believe is the most important because I want to constantly show the people I love how I feel. I want to fill my heart with love always and I cling to that right now, because there is so much hate out there. I will not let it infect me. I want to love even those who want to harm me and those I hold dear. The last part is the hardest. Even though I try to be loving, it is difficult not to harden my heart to the people who want to hurt people I care about. Because I know nothing gets accomplished by my heart going to the dark side, I decided I needed a daily reminder to keep my eye on my soul. I will have the courage to love deeply and I encourage everyone to use that one right now. If everyone woke up and put love first, boy wouldn’t this be a better world.

These are a couple of ways I am trying to keep my mind, body, and soul this year. I encourage anyone to try to find something that grounds you, if you haven’t found it already. I’ve learned that I can’t control politics, religion, or other humans, but I can control how I react to all that. So, these small things, setting myself on a path every morning, are helping me stay the course. I need to be reminded every day to live my life fully, mindfully, and with love. This is how I am going to ground myself and keep my head.

 

The Monster In My Pants

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After the tears I just had to get out of the house.

I’ve been thinking about freedom recently because of the new president, this town which is the birthplace of freedom, and my continual grasp for freedom. I don’t mean the rights that are in danger right now in this country: like free press, freedom of religion or gay marriage. I mean the freedom of movement. I am desperately clinging to my freedom to leave the house when I want.

I feel like I should explain what’s going on with me because I am not exactly clear on what’s wrong so I have refrained from writing too many specifics. Something is wrong in my crotch. They don’t know what it is. My gynecologist has said it isn’t a feminine problem, but the other two doctors I see aren’t so sure. Second and third opinions are forthcoming. What we know for sure is the fibroids aren’t causing this pain, and it’s not endometriosis. So we are clueless as to what is causing my pain. I have had relief but only when I am not premenstrual or menstrual or for two days after. This relief between my cycles comes from the physical therapy and yoga I am doing. Around my period though it is as if someone is stabbing me right above my hip. Add this to my hormone fluctuations and my fibromyalgia and life is really shit when Aunt Irma visits. I have been entertaining this pain for about five days so I hadn’t left my house until yesterday to physical therapy, and I didn’t want to go to that either because of the pain.

My lovely therapist tried to massage and move the pain away to no avail. The examination turned into a consultation with another therapist to sadly no answers. There was just too much poking. It really is too much. I am sore today from the movement and the examination. My physical therapist is amazing because she has brought so much relief. I believe she will find an answer for me, because she is that good. However, these exams are really embarrassing and tiring. It is almost like getting a pap smear once a week. I am emotionally exhausted too. I am tired of hoping that there will be an end to this pain, when none is coming.

After my exam I was so depressed that there still wasn’t an answer for the swelling and the pain. I sat on the metal chairs outside this building full of doctor’s offices watching people with wheel chairs get dropped off and picked up feeling sorry for myself. I was full-on sobbing and vaping. Like…seriously… I stopped when a particularly sad looking fellow limped by with a foot cast on and he was wearing a robe. His face was a stone. The look of despair in his eyes was shocking. When I saw that my messed up brain said Poor guy, I should tell him it will get better.

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Beauty sometimes makes it better

Yeah, you see the irony. I mean what would this man have said if I had told him it will get better while crying. I wiped my eyes and started to leave and then it was like an alarm went off in my head that said, “Don’t go home.” So I took off walking. I walked over to Penn campus to check out all the beautiful brick buildings. I sat in front of the Starbucks watching people until I started to realize that all these kids had potential. When that made me feel pity for myself, I got up and kept walking. I walked to the river and stood there for a while looking at the train station and the river feeling lucky for the first time that day. I took a picture to show my family. We play “Where is Aunt Danielle Today?!” They are in Enid, Oklahoma and I like to show them all the landmarks of Philadelphia. In turn, I get pics of my smiling nephew. I get the better end of the stick for sure.

I finally decided to go home then. I guess I just didn’t want to go home and cry. I was tired of being home. I waited at a mall food court until my husband got off work.

I think my new tactic is to stay out of my house as much as possible. I am a vibrant person. I need human interaction. When my first instinct is to be easy on my body, I need to rebel against that because my body and my mind needs movement and excitement.

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Can I make this my new desk?

I am at a coffee shop today. I am looking out the window in Old city watching people walk by. I figured if it worked yesterday maybe it would work today. I will just stay out of the house as much as possible. I want to build memories of this city. I want to declare and take advantage of my freedom even if it hurts. I am leaving the house even when I am in pain. I am done hiding my pain in the dark. If I have to sit for a while or wince openly then I guess people will just have to deal.

I will just stay out until I create a memory. Tonight I am meeting a friend for dinner. Let’s see how that goes.

 

 

 

The Best I Can Do

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Making Physical Therapy fun: I wanted the fake people to look like Star Trek characters. Is that Captain Kirk at the bottom? Why yes it is! 

Mom exercises every day. She’d wake up hurting and get ready to do her exercises. I thought she was crazy for years. Who thinks, Oh, I am in pain, I think I’ll exercise. It goes against all the logic I’d ever known. When you’re sick you lay in bed, right?  I’d say, “If you hurt why are you doing exercise?”  She would reply, “I have to exercise this morning or it will hurt more later.”

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My Momma: my eternal fitness hero

I didn’t really understand what she meant until I too developed Fibromyalgia. Now I am amazed at her resolve. Seriously. That woman is made of steel. The first couple years of Fibro kicked my ass. Waking up in pain is a buzz kill. Your whole day can be tainted. Waking up with fibromyalgia is like someone beat you with a baseball bat the night before and then you drank a liter of rum. Every morning you are sore and hung over. Mom woke up in that fog every day strapped on an exercise bra and just got to work. I bitch and wine like nobody’s business.

It seems like a weird idea, right? Think about waking up with the flu and being told the cure is exercise. Um…yeah, wouldn’t you think that’s bullshit? No, you would retreat to bed and not wake up until it ended. The sick part is, it never ends. You will wake up every day with the flu, and the only way to have the rest of the day is to exercise through it. Then the next day, start all over again.

When Mom told me she had to exercise I thought she was crazy. I didn’t understand then, what I know now: with Fibromyalgia exercise is essential. I told the doctor that I felt like a piece of machinery that rusts when it sleeps or sits too long. If I don’t stretch and move my joints, then I am in pain all day. It’s like I am lubing my muscles and joints. Once I have done that, then I can move onto my day.

My physical therapist, Melinda Gross, said that with Fibromyalgia you have to challenge the body regularly with controlled “stressors” in the form of exercise because it increases the body’s tolerance. So I have to increase walking, yoga, chores, strengthening exercise because it increases my baseline threshold for pain and stress.

Did anyone else’s dad ever make that joke? You know the one after you’ve been complaining your head hurts, and Dad offers to step on your toe to make your head hurt less. Turns out, that’s kind of a thing.

In other words, I have to put my body through a small amount of pain so that I am not in greater pain later. Also, if I put my body through more pain then what I have built up then I am in serious pain for days. So, I have to measure my activity every day. Once I painted a hutch and for the next three days the couch was my best friend.

When I think about it too closely, I get angry that I didn’t figure this out sooner. It is also very hard not to be angry that I can’t just wake up and be fine like a normal person. I get depressed at my pained muscles and stiff joints. It is easier to stay in bed. It is easier not to go to my twice a week doctor’s appointments. It would be easier if I could just take some pills to make the pain easier and just dribble into my pillow.

I was not happy when that’s all I could do, but it didn’t require much strength of will or physical strength. It was easier, but I wasn’t happy. My loved ones deserve much better than that, and so do I.

When I think about just sitting and sulking on the couch or skipping my doctor’s appointments I think about my husband. I am lucky, because he is the most patient and loving man. He is there every day telling me it is okay I am in pain and it isn’t my fault. He is my strength when I don’t have any. He deserves to have a wife that feels good about herself. I concentrate on that love when I am trying to get up to start my day. I concentrate on the love that I feel for my family and my friends. I concentrate on the fact that I want to soak up moments with them. If I am in pain, I will just be thinking about the pain.

I’m not perfect every day. I still have days it takes me a while to pull my head out of my ass and get moving. I was lamenting the fact that it takes me almost an hour and a half of exercising and icing to get me to feel normal/good. I did an unofficial Facebook poll of my friends and some of them exercise two hours a day. These are people I assume don’t have fibromyalgia, or any of my other health problems. So, I am not alone. They too use exercise to feel like themselves. I just have a large cattle prod getting me to the yoga mat.

Sadly, some days it still isn’t enough, but I am getting there one yoga work out at a time.

Out of Mourning, a New Resolve

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I am sorry that this smile is gone.

My beautiful, young, full of life cousin just passed away in her sleep. Ashley was nine years younger than I am. She passed away at thirty-three due to complications with her ongoing lung disease. She will be missed by so many. I really admired her spirit and determination. See Ashley has had lung problems all her life. She spent so many days and nights in the hospital being watched over by her poor Mom and Dad who worried constantly. She was a slight little thing as a kid and grew into a rebellious youngster. All of us are rebellious at one point but when you have bad lungs smoking and drinking are even worse. Luckily this time was short. She pulled it out quickly and then focused on her health. Ashley died being a wife, a devoted step-mom who undeniably adored her charge, a spitfire (crazy smart opinionated women run in my family) and amazingly a weight lifter.

It would have been so easy for Ashley to ruminate on the fact that she was born with a set of defective lungs. She could have sulked and stayed in bed, but she rallied and built a full life for herself. Not only that but she built her body up. She worked out steadily and ate well. She built up a business. To see her do all that with the body she was given, makes me feel inspired to do the same.

The past two weeks I have been requiring myself to do yoga absolutely every day. You know that hashtag #yogaeverydamnday? I haven’t really understood that because I feel like it has a negative connotation and yoga has always been enjoyable to me. This past two weeks I have been understanding it. There are days when I have had to crawl to my yoga mat and start by laying on the floor to stretch lightly. I slowly loosen my creaky muscles until I can move without pain. Then I move on to stretches that require all my muscles. It has become a requirement for all of my days. If I don’t do it then I will be in pain all day.

I think that it would be easier sometimes to just stay in bed. I have spent many days this year in bed with the pain and I am sick of it. I hope the ritual I have adopted will keep my out of bed for the foreseeable future. I haven’t tested this theory during my dark days when Aunt Irma visits, but I guess we will see. My physical therapy is working and I am so happy about it.

I think this new resolve is coming from a place of remorse for how much I have let my body sort of fend for itself against my vices.

Perhaps I can take up her mantle of good health. Maybe someday I can be someone people look at and say Hey, she had all that pain but she still put her health first. I hope so. I just have to keep making that uncomfortable walk/crawl to the mat every morning. If I can build on that. I might be able to follow her example.

“You are…fat?”

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“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?

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.