I keep letting life’s little (or big) events take me away from the things I enjoy. One of which is this blog which I never can seem to get myself to dedicate myself to wholeheartedly. I think the thing that keeps me coming back to wanting to get this blog off the ground is that I wish I had been able to find a blog that I really felt resonated with me and my issues with chronic pain.

As I’m closing in on two years from when this whole debacle started I am trying to remain grateful. I spent one year tracking down every possible lead to sniff out what was actually making me sick and that turned out to be Small Intestinal Bacterial Overgrowth (SIBO). I pretty unknown illness despite how many people it most likely effects. Then this past September I was diagnosed with Endometriosis and was whisked into surgery to remove a fibroid, two cysts and a handful of endometriosis, plus a hernia! After the surgery I wasn’t getting better the way the doctors had anticipated so they removed the IUD to see if that was causing issues, but everything was still extremely painful. I feared that i would never be able to return to work after the leave I took to heal after the surgery. I was emotional and physically hanging on by a string.

At what felt like my 20th appointment with my gyno specialist he thought I may possible have trigger points. Trigger points are areas that are the source of the pain, but the actual pain can be sending referral pain all over the place. So he did an injection into my stomach and I felt better for almost two weeks! That had been the first time I’d felt consistently better in almost 6 months. Then I had a crappy week followed up by a pretty good month overall. However, everything went back to crap and I found myself more depressed than ever after flying so high only to crash to the ground. Boo.

My mom and I decided it was time for me to see a pain specialist to see if there was anything else I could do to help the pain besides Norco. I currently see a pelvic pain physical therapist, I’m starting on a new birth control, I take CBD oild and follow a strict diet, but I still couldn’t control the pain and even the Norco was barely taking the edge off now. So I was really putting a lot of hope into this appointment. I explained what was going on and that I knew some of this was endo related and I was working to control that by getting on BC, but that I just had a gut instinct this was something more and was related to over tightening in my stomach.

The specialist must have felt similarly, because she put me on Gabapentin for nerve pain and said that she too felt like I might have trigger points, but that it would probably take more than one shot to feel better so not to get discouraged and that I may have a nerve entrapment involved as well.

That brings us to now. I feel like so much of my life has been stripped away from me. My chronic pain prevents me from leading the kind of life I want to and most of the time stops me from being able to make plans more than a day in advance, but I will get better! I will get to a point where I can manage the pain and have the kind of life I want. Yes, that may require compromise on my part about what that kind of life looks like, but I will get there.

I am so tremendously grateful that I have such an amazing support network. That my body wants to keep up in this fight and that I live near a large city so I’m able to get very knowledgeable doctors who know what they are doing and are on the cutting edge of treatments.

For those who suffer…from anything really…please remember that you are useful and you can still partake in this world. You still have all of you to offer the world.

 

One Day

My appointment with the Endo specialist went exactly as I wanted. I should feel happy that the appointment went the way I wanted, but unfortunately when the way you want things to go ends with surgery it’s a little difficult to celebrate. This was the first time I had a male gyno and, although he was very nice, I did feel a little weird. He met with my mother and I in a regular looking doctor’s room and asked me question after question so he could paint a picture of my health with my words. He then said he would like to do another ultrasound even though I’d had one done last week as my regular gyno’s office. So we proceeded to move down to another office that was used for ultrasounds.

I stripped down my lower half and waiting on the table with just a thin sheet of paper to cover give me a sense of modesty even though this man was about to probe into me with all sorts of fun contraptions. I waited about ten minutes, but it felt like a lot longer with nothing to keep my mind occupied with as I waited for him. He explained what he was going to do. Even though this wasn’t my first rodeo I appreciated the synopsis and it put me a little at ease. He asked me to scoot to the end of the table and put my feet in the stirrups. I do so and my knees splayed out a bit leaving all my bits on display for someone who’s not my boyfriend. He held out the speculum and let me know when it was going in and then began using the ultrasound wand.

He pressed into different spots and let me know where my right ovary was and my left. Told me when there was a cyst and when it was clear. He made the mistake of thinking he wasn’t recreating any of the pain, but what he doesn’t know is between hip surgery, living with this pelvic pain for the last 1.5 years and horrible periods since I was 11 is that I’ve learned how to breathe through most of the pain. Many of the areas he pressed spiked up to a level 5 or 6 of pain, but when you spend most of your days at an 8 or more you can’t fret about the lower numbers or you spend your whole life obsessing about your pain. I let him know I was actually in a fair amount of pain and he pressed areas again asking me when I was in pain. Funnily enough when he pressed down it actually recreated the pain I feel four inches below my belly button. It’s funny how the sources of pain isn’t where you feel the pain sometimes. Referential pain can be a bitch when trying to get to the source of the pain.

He also did a manual exam for whatever reason. After the ultrasound wand it barely made me flinch. Just odd having another man’s fingers in me palpating around. Sometimes it feels like SIBO and possible Endo has robbed me of whatever dignity I’ve had, but that’s not true. I only lose my dignity if I allow others to take it. He told me he’d have a nurse bring me in a towel to clean myself up and that we’d meet in the conference room to go over a game plan. The nurse came in 10 minutes later and I sat there for a minute once she shut the door just thinking about how the next few minutes may define my future.As usual I just pushed myself up and got dressed making my way down to the conference room.

My mom and I sat there for what felt like an eternity, but was really only a handful of minutes. I told her my worries. I worried that another doctor would ignore my pain and tell me just to try the IUD or that we would do surgery and they wouldn’t find Endo so I will have gone through all of this for naught. Soon the doctor came in and shut the door behind him.

“So I think you should have your diagnosis”, he said matter-of-factly. I breathed a sigh of relief and also a sigh of worry for what was to come next. Someone was actually listening to me. They could see the pain in my body and the weariness in my eyes. He then went on to say how I had a lot of markers of Endo and that he wants to go in there to confirm. If I do have Endo he will remove all of it. I was instructed to do a bowel prep beforehand in case there is some Endo tissue on the bowel and he said he hopes it’ll help clear up some of my GI issues. He also told me that they could put in the IUD while I was under which is definitely a godsend. One less mortifying, painful experience I have to go to. He suggested the Mirena instead of Skyla since it’ll last for 5 years and I’ll be under for the insertion so the little bit of extra size shouldn’t be a problem.

He was talking about scheduling my surgery for two to three months out, but once my mom mentioned that I have to take Norco everyday to deal with the pain he said he’d get me in sooner. So now the surgery is just a little two weeks away. One step of my game plan is under my belt and now I have a handful left to check off. I will not let this illness beat me without leaving all my blood, sweat and tears on the course. I am not beaten into submission that easily.

My greatest fear and the worry that bounces around in the back of my head that I try and shove into a box is “what if they don’t find anything?”When that happens I tell people or take a deep breathe and tell myself that SOMETHING is creating this pain and I will figure out what it is. I tell myself what I would tell my best friend, my sister, mom. I tell myself what I would tell someone I love. Something is causing this pain. You aren’t crazy and you aren’t meant to live this way and we WILL figure this out.

I couldn’t get through all of this without the strength of my best friends, my mom and my boyfriend. I also have to remember that I am strong. I’ve made it through hip and knee surgery. I’ve made it through severe anxiety and depression when I was younger. I am a fighter and there will be a time in my life where I won’t be preparing for battle, but enjoying the view. One day.

 

 

 

 

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.