Will My Life Be Different in Five Days?

My friends and I were playing a card game this weekend in which one of the questions was “Who’s life will be different in the next five days?”. It made me think about how much of the health of an endometriosis patient depends on finding the right doctor and receiving the right treatment. I have an appointment with a specialist and god-willing my life will be different in the next five days. It’s weird to be pray that some stranger will be educated enough and care enough to cut me open to determine if I have endometrial tissue growing in the wrong places and get that out of my body asap. It’s unnerving to feel like the rest of my life hinges on someone else.

So what can an endometriosis patient do to put the power back in her hands? Become as educated about their condition as possible! While there is no cure for Endometriosis there are treatments out there that are better than others and ways that you can assist your health. Having a surgeon who can get it all from the beginning  means less surgeries and less scar tissue creating adhesion that can can complicate issues even further. Many regular gynos do not have the experience or the knowledge to spot all the different types of endo or know where to look.

My first step after my gyno told me I probably have endo (after I freaked out for a week of course) was to learn as much as I could about it which is no easy task.The internet is chock full of women still in pain and suffering everyday. It’s hard to keep up a positive spirit when others in my position are still in tremendous pain with no respite in site. I have to remember that I am different and I can only do all that I can to heal myself. Once I felt like I knew as much as I could from the internet I stopped reading all the posts because it can get pretty depressing after awhile. I bought the highest rated book off of Amazon called Stop Endometriosis and Pelvic Pain by Andrew S. Cook MD. It was incredibly insightful and helpful. It outlines how to find the right doctors and gives you the right questions to ask. It helped me feel like at least some of the power was back in my hands and right now that is my bright light at the end of a dark tunnel.

Hopefully, I’ll have interesting and positive updates soon!

Where’s the Silver Lining?

I’m normally a “what’s the silver lining of this situation?” kind of person, but lately it has been a non-stop shit storm of bad which is why I’ve been non-existent on the blogosphere. The last thing I want to do is ruminate in the mess that is my life currently, but I think it’s an important part of my mental health that I need to return to.

I’ve been dealing with something called Small Intestinal Bacterial Overgrowth since March 2015 and am retesting again in just a couple days to see if I’ve made a dent. Despite treatment after treatment and a major overhaul of my diet I was only 50% better and couldn’t figure out why. I threw an antibiotic at it multiple times (Xifaxan, as it is the only approved antibiotic for this condition since you don’t want to wipe away all the good bacteria), changed my diet to rid myself of gluten, dairy and soy plus numerous other delicious items, did acupuncture every two weeks, yoga, meditation, numerous embarrassingly awkward diagnostic tests and a handful of other healing methods.

About a month ago I started getting some super awesome pelvic pain and pain in my right ovary which I thought was reference pain from scar tissue thanks to a hip surgery in 2011. Turns out it was a big cyst that had burst. Honestly, I never thought I’d be thankful for a cyst, but the cyst is what brought me to my gyno who decided to do an ultrasound right there in the office after I explained my symptoms and what a typical period is like for me. During the ultrasound she found liquid leftover from the burst cyst, another forming on my left ovary and a bunch of vascularity which according to her is a sign of Endometriosis. I really don’t have any idea what vascularity means except that they were a bunch of black clouds on the imaging of my lady parts and apparently those clouds mean stormy days for this lady.

She confirmed she believed I have Endometriosis. I am 27-years-0ld and have been dealing with terrible periods since I was 11-years-old ranging from pelvic pain, heavy bleeding, excruciating cramps that are only tolerable with Ibprofuen and some Tylonel mixed in for good measure. The only way to really know if you have Endometriosis is to have a small surgery (is any surgery small?) so the surgeon can view your reproductive organs and see if there is endometrial tissue where it shouldn’t be. Usually they will try to treat with birth control first. So on September 8th I’m getting a lovely little device called Skyla inserted into my hooha. Skyla is an IUD that releases localized hormones to prevent pregnancy, but it has also shown to help prevent endometrial tissue growth and with pelvic pain in a lucky few.

Since I found out this news like a week ago I’ve been having huge bouts of anxiety thinking about how difficult having two chronic illnesses will be. I wallowed and self-pitied the last few days away hating my body and thinking about how I could have changed my diet sooner and possibly have prevented this. Somewhere amidst the tears and streaks of mascara running down my face I managed to activate some kind of self-care protocol and just take some deep breaths. I stopped binge reading blogs and articles from people with Endometriosis that just had me cycling down a rabbit hole of self-despair and concentrated on what steps I need to take next instead of already assuming the outcomes will be bad.

So first step is the IUD and apparently that one’s a doozy!

 

 

 

 

Freedom from Fear!

This year I’m following my yoga training when making my New Year’s resolution and choosing an intention instead of a specific goal. I know this goes against the grain and what every website or book will tell you about making a good goal. There’s no tangible steps to reaching this goal and no definitive point at which I can say “Jen, my friend, you have achieved your goal for this year”.

For one, I don’t want to stop just because I reach my goal. I want to push pass it! I want my entire year to support this intention and for it to become a part of who I am when 2017 begins so I can set a new intention that will leave me as a better person than I was the year before. So my intention this year will be to live fearlessly and not to make decisions because of a fear of failure.

Since there isn’t a specific benchmark for meeting this goal I will be writing down on a slip of a paper every time I do something that supports this intention and putting it in a jar to open on the next New Year’s Eve. My wish is that this goal helps me do things that I have put aside because I’m fearful or think I will fall flat on my face. We only have one life to live and I don’t want to reach the end of mine wishing I had experienced more in life, but was too fearful to really get out there and see all the world has to offer.

I know this is the right intention for me because it fills me with both excitement and dread. If your goal is comfortable then it probably isn’t challenging  you. So here’s to wishing for freedom of fear in the New Year!

Flip Your View

Losing a loved one is hard at anytime, but losing someone when you’re young sets your life on a course that most never have to travel. The first time I was old enough to truly recognize what loss looked like was at a girl scout retreat in the 2nd grade. It happened so fast. One of the girl’s mothers drove up in her SUV, not to the parking spots, but right up the trail to where our troupe was meeting the other troupes at the campsite for the first time to partake in the swapping of the pins we all made. Her mother threw the car into park and jumped out. In seconds my friend was in her mom’s arms as her mother kneeled down to her with tears dripping down her eyes and off her chin. No one could hear what they were saying, but the look of pure grief is universal. I didn’t need to know what exactly happened to know that my friend’s life had changed course forever.

It turned out that her father had unexpectedly passed away and once I found out I demanded that my mother take my home so I could see my father. Speaking to him on the phone didn’t ease my fears. I needed to feel him hug me and hear him tell me everything would be okay in person. It felt like if at that very moment I didn’t make my way to him he could slip right through my grasp as well.

I had always had a fear of mortality since I could remember. So fearful that my mother could pass away at any moment that I suffered from embarrassingly acute separation anxiety that kept me out of school in the third grade for almost two months. I was afraid if she wasn’t under my watchful eye that something traumatic might happen. It turns out I was worried about the wrong parent.

A month after my 13th birthday my father died. It was unexpected and caused by the drug Vioxx that ended up taking many more lives than just his. It’s rare that one can look back and see when their life became altered. When it veered off onto another course. I always thought I lost who I was because of that moment. I became so eager to please others. An ever watchful eye over my friends to prevent harm from coming to them. Typical older child behavior. But since then I’ve found and lost myself so many times I can’t keep count. I think if I ever truly found myself for good there probably wouldn’t be much point in living now would there?

I woke up that Friday morning when he stood to get up as his alarm clock went off and he hit the floor.  He barely had time to get a few feet from his bed before he was gone. I ran into my parent’s room and my mom screamed at me to call the police. I followed orders and called them and handed the phone off to my mom who was already performing CPR. I remember knowing with certainty he was already gone. I couldn’t feel his presence in the house anymore. The first ambulance couldn’t find our house so I ran quickly outside down to the intersection in my blue flowered pajama shorts and tank top not even remembering to be embarrassed that I wasn’t wearing a bra. The sidewalk should have felt cold under my bare feet, but I never noticed. I flagged the ambulance down and ran back into my house all the way upstairs and closed my little sister’s door quietly. She slept through the entire ordeal. Soon the second one came and a female cop was asking for my details of what happened. I looked at her wanting to tell her everything that was going on in my head, but for the first time (and last time if you ask anyone who knows me) I had no words.

She turned and told her coworkers I was in shock as my dad was carried down the stairs on a stretcher. My mother told me to stay here and that my aunt would be over soon as she ran to catch up. I watched out the front window as she climbed into the ambulance and was left in the silence. I ran upstairs to their room expecting my whole world to look different, but the only thing remaining was a small blood stain on the carpet. Everything after that is a blur of calling family members, a wake and a funeral. Sometimes I feel like my whole life was a blur until I started to emerge in my 20’s.

There’s no question that I’m not the person I would have been had my father lived. I used to sit and daydream about the person I would have been had my mother been able to resuscitate him or the drug market had caught the forging of studies to pass the drug before it had been given to patients. How I wouldn’t have looked for a father figure in every older man in my life who then ended up letting me down time and time again when they weren’t what I needed them to be. How I wouldn’t have felt so alone in the world because a piece of me was ripped away that would never heal. How I wouldn’t seek others approval so readily because I would never have the approval of the one person I needed.

This all sounds like a very sad story. I suppose it is one depending on how you look at it, but over the years my perspective has changed. I don’t see myself as a victim and, yes, my path may have veered down a different course, but it doesn’t mean it was a bad one. My father changed me while he was alive and in his death. I now know how short life is and I don’t waste time. I want the people I love to know that I love them and fiercely. I am resilient, a fighter, and I’ve used that in all the different health issues I’ve been tasked with in my life. I acknowledge fear, but I don’t let it control me. Most of all, I’ve learned that perspective is one of the greatest tools you can have. Bad things are always going to happen. They’re inevitable. It’s how you look at them that determines what kind of person you’re going to be and I plan on being the kind of person who does a headstand when the view isn’t looking so hot.

Pee Jugs and Leaky Gut Test

So today is the day I was finally able to do the Leaky Gut Test or Intestinal Permeability Test. I had to go off my Protonix for 72 hours in order to take it and then nausea from starting Lexapro made me push it off further.

I couldn’t find a lot of information from others who have taken the test so I thought I would document it here.

I had to fast starting at 10 PM the day beforehand which isn’t hard because eating anything makes my stomach go nuts anyways so I try and eat as far away from bedtime as possible. When you wake up in the morning you have to pee before taking the lactulose/mannitol solution to get a baseline. Unfortunately, the little cup they give you to pee in is…little. Nothing like waking up in the morning and peeing on your hand.

So I cleaned myself up and did what I had to do. Drinking the solution is easy because all you have to do is add water and it’s actually slightly sweet tasting. I’ve been diagnosed with “IBS-C” but I go everyday at 10:30 AM typically and have been type 4 on the bristol chart consistently for about 2 weeks since going paleo. My biggest problem is horrible, debilitating abdominal pain and what feels like gastritis/food processing issues. So I was afraid that the lactulose would make me more prone to softer stools today, but other than being super gassy/bubbly everything seems to be normal.

You can’t have anything after the solution for 2 hours so you can guarantee I was sitting at work watching the minutes tick away and salivating. After 2 hours you drink a glass of water every hour on the hour and for someone like me with small bladder problems it’s leaving me going to the bathroom every 1/2 hr. Boo.

I think the most awkward thing is doing this while at work because I didn’t want to miss another day. I have a giant ice filled lunch bag to keep my pee jug cold and have to lug it with me every time I go to the bathroom. No one’s asked anything yet, but I’m pretty sure the woman next to me in the bathroom was wondering about the funny noises as I poured my pee from the cup into the giant jug and kept opening and closing my giant zippered lunch bag. Gotta keep an eye open for the humor in everything though!

I will update later.

Update:

11:29 AM-So much water and so much peeing. Peeing is just my new purpose in life.

1:04 PM- Almost entire bottle that I’m supposed to fill my pee with is full. Hopefully I don’t have to pee too much between now and 2:30 PM. Eating a salad with olive oil since I can’t have any fructose containing items which the majority of dressings had. I feel like a rabbit. Nom nom.

2:30 PM Olive oil “dressing” was actually quite tasty and probably added some extra fat I need in my day. Peed two more times and was just a hair away from filling up the whole bottle. I forgot to shake it up before taking the pipette which hopefully doesn’t screw things up too badly. You’re supposed to shake up the whole bottle before getting the sampling because the sugar moves to the bottom over the course of the day. I forgot to bring the directions in with me though on my last covert bathroom mission.

I measured in at 1720 ML of urine and apparently that’s important because they make you write that on the sample, along with time, date, etc. Then you get to pour out your yellow gatorade. I poured extra slow so the women in the stall next to me would think I had a super-sized bladder. Have to have fun when you can! It was very League of Their Own.

Then my mom came to pick it up and off it went to be sent overnight through Fedex. They need to have a 24 hour turn around time from when the samples are given which left me having to take it Monday through Thursday.

All in all, it wasn’t bad. I tried to be as discrete as possible, but it doesn’t exactly lend itself to be a flying under the radar type of test when you’re at work. Thank god I’m salaried and don’t have to clock in and out. I’m super nervous because I didn’t shake the pee bottle up before taking the sample since the directions say to do so since the sugar can go to the bottom. Sigh. Hopefully it points to something that can help.

Forward and Up

Well, it’s been a hot minute. I’d like to say that it’s because I was busy out living life and taking names, but I’ve actually been dealing with a lot of issues to do with a currently undiagnosed digestive issues.

It started in a random day in March with an evening full of tons of stomach gurgling and churning and finally vomiting. Then it was gone until the next week and when it lasted for two days I ended up in the ER. Since then it’s only gotten worse with four more visits to the ER and tons of tests. I’ve gone paleo while they continue to work me up and that seems to be helping a little bit, but the abdominal pains and bloating continue to persist. At least paleo allows me to lead a little bit of a life while going through test after test.

I’ve continued to workout, but I’ve lessened the amount and intensity a lot. Especially because I’ve been eating a lot less. It was hard at first because I felt like I was being lazy and should push through the pain, but health has to come first….and y’know sanity.

I’ve been through an endoscopy and a colonoscopy so far. Let me tell you that the fasting for the colonoscopy was way worse than the actual colonoscopy, but never did I think I’d be getting one before I was at least 40!

Suffering from a digestive illness can be really isolating because it prevents you from going almost anywhere or doing anything because you never know when it’s going to strike, although lately it’s been almost constant. It’s been going on for 6+ months and in the last couple months I’ve really started to just feel like a shell of myself. A husk. It’s hard to find enjoyment in life when you feel trapped in your own body. Scared you’re going to lose your job because you’re struck down by some mystery illness. Many a day I find myself coming home after holding in my emotions all day at work and just losing it. There’s only so much help others can offer because at the end of the day you have to be alone with your own thoughts. My brain is my worst enemy sometimes and loves to throw in “what if I never get better?” or “what do I have to offer anyone now?” as soon as I close my eyes. It seems like half of the pain from any kind of illness is your own brain working against you.

The one thing pain does do for you is make the path you want that much clearer. At least for me. I’ve struggled with different decisions I’ve had to make regarding my personal life and what I want to do with it. Sadly, sometimes it’s only when you can see yourself having no choice is finally when you realize what choice you want.

I have a lot to look forward to and a lot of life left to live and I don’t plan on living that in pain forever. It’s so easy to get lost in the sadness, the constant pain and loneliness of being treated like a guinea pig. The important thing is to concentrate on the good parts of my life now and where I want to be in the future. Imagining the life I have waiting for me keeps me propelling forward.

The Adaptability Advantage

Well, it’s been a hot minute since I’ve had time/felt well enough to post. I’ve been battling some food sensitivity and ulcer problems that have made day to day life a bit of a struggle. Things seem to be clearing up and I’m actually able to sleep at night without the feeling of my stomach trying to eat itself so I’d say that’s a pretty good improvement.

One can never anticipate all of the curve balls life is going to throw even if the best precautions are taken. I eat healthy, take care of myself and exercise regularly and I still ended up with ulcers. I spent some time feeling sorry for myself over the last few weeks as my normally optimistic disposition was hardened by the constant stomach pain, but, let’s be honest, that place is just no fun and life has too much to offer for me to miss out because my stomach is being cranky.

So I adjusted. I took the medications they gave me and began following a bland diet so my stomach lining could begin healing itself and ignored the call of the spicy foods I love. Worst of all, I had to cut back on my coffee. GASP. My adaptability is one of my best traits, although it is hard sometimes just to roll with the punches given all the health issues my body has thrown at me. I don’t want to be the one who rains on my own parade though. It’s definitely not easy to be adaptable though and sometimes it’s hard to draw the line between adaptability and not being assertive. I can adapt to a heavier workload, but the question is should I be adapting to it? My body can adapt to workouts seven days in a row, but am I doing myself any good by exercising that much?

Unfortunately, being assertive is not one of my strong suits so my ability to adapt can sometimes become dangerous to my mental or physical health. It’s something I’m working on. What’s the point of living if you aren’t constantly stretching yourself out of your comfort zone and learning new things?

I seriously feel for those out there with chronic stomach problems. Two months of this was bad enough. I can’t imagine having to deal with IBS or chronic acid reflux on a long-term basis while keeping my cheery outlook on life. I applaud you. One thing I really noticed that surprised me was how good exercising actually made me feel temporarily. Before the doctors actually figured out what was going on I was having stomach cramping and a terrible gnawing feeling constantly and was in desperate search for things that would make me feel better. It was really hard to get going, but after every time I exercised I felt good for at least 2-3 hours after. Just something to keep in mind if you too are suffering from some GI issues.

PS. I PR’ed my dead lift last night with 170 lbs and did 100 burpees for time (took me 12:25 minutes)! The time isn’t that great, but that’s the first time I’ve done 100 burpees in a row ever so that’s a win in itself.

Keep setting goals for yourself even if it’s just getting to the gym in the first place!