UAB Update

I’m on my way home from seeing the UAB OB/GYN who is very used to treating Endo. We are going to adjust my medicines and put me on something with less estrogen and more progesterone. She is putting me on a monocyclic BC instead of a tricyclic BC like the one I am currently on. She suggested an aromatase inhibitor like Lupron except it is a pill instead of a shot. I’m going to do some research and we will discuss adding that to my medicines in 3 months when I go back. Should all that combined not work, we will look at a IUD. She wants me to hold off on surgery as long as possible, but should everything else not work, that is the final step. I am cautiously optimistic.

Health Update

I know it’s been a hot minute since I uploaded a blog post. A lot has gone down in the last week health wise.

Sorry guys. I know it’s been a hot minute since I uploaded a blog post. A lot has gone down in the last week health wise. I honestly am beginning to feel really hopeless and crushed. I know that this isn’t the end but is only the beginning. God will provide.

So the Center for Endometriosis Care (CEC) reviewed my medical records and called me Thursday. Dr. Kongoasa asked me a lot about my symptoms and where my pain was located. At the end of all his questions, he concluded that my pain is most likely due to Adenomyosis. It is one thing to know that you may have a disease like Adeno, but it is a totally different thing to have a specialist tell you they believe that is the root cause of your pain. It is a major emotional blow. I spent quite a bit of Thursday in tears and am honestly still trying to process everything. I also found out that I can’t afford to have surgery at the CEC this time.

So what is Adenomyosis?

Adeno is a disease in which Endometriotic tissue is found within the uterine wall. The symptoms include abnormally heavy or prolonged menstrual flow, and/or severe localized cramps near the uterus. This seems to be linked to Endo and there is a subset of women who suffer from both diseases. Adeno is commonly thought to only affect women over 30 who have already given birth. This is so not the case. Due to the fact that Adeno can only be diagnosed through a full pathology report on the Uterus, most women don’t get officially diagnosed until they are in their 30s and done having children. Both Endo and Adeno can affect women of any age. I am living proof of that.

Suggested surgical treatments

(Disclaimer: These are what my OBGYN suggested for me. Everyone is different and you need to talk with your own doctor rather than assume because it was suggested to me, it is the best course for you)

Dr. Kongoasa gave me a few treatment options. He said I could have a Mirena IUD implanted, a Presacral Neurectomy (PSN) performed, or a partial hysterectomy. I am way too young to begin even thinking about a partial hyst. I am honestly not very comfortable with an IUD as they are relatively new to the treatment of Adeno. My mother had a PSN before I was born. I am pretty comfortable following this treatment path.

Presacral Neurectomy (PSN)

A PSN is a procedure where the surgeon goes in (preferably laparoscopically) to remove or interrupt the nerve pathways that innervate the uterus. In 75% of patients, this procedure is very successful for many years. It does have some side effects in 5-10% of patients. These nerves can also innervate the bowels and bladder which may lead to constipation or a sense of urgency. This will not affect a woman’s fertility, but it may cause a painless labor.

The Spoon Theory

The reality of living with a chronic illness is beautifully laid out by Christine Miserandino on her site, www.butyoudontlooksick.com. She uses the illustration of a handful of spoons to demonstrate how a “spoonie” has to make daily decisions about what to do.

The reality of living with a chronic illness is beautifully laid out by Christine Miserandino on her site, www.butyoudontlooksick.com. She uses the illustration of a handful of spoons to demonstrate how a “spoonie” has to make daily decisions about what to do.

The Spoon Theory

by Christine Miserandino

www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said, “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case, Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As she rattled off daily chores or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons” because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time, I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this every day?” I explained that some days were worse than others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me, it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste every day? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them because they have one of my “spoons”.

© Christine Miserandino

An Open Letter to My Friends

To keep with my theme of open letters, here is an open letter to my friends. to the ones I’ve canceled on, to the ones I’ve blown up on, to the ones who support, etc

In continuing with my open letter theme, here is an open letter to my friends:

To the friends I’ve had to cancel plans on, I’m so sorry. I try my best to follow through on the plans I make, but sometimes I just can’t. I really want to be there for you and support you. There are just some days when my pain levels are too high for me to function, or I am way to nauseous to think about leaving my house. I wish I could be a reliable and dependable friend. I try to do what I can.

To the friends I have gotten frustrated with and blown up on over a seemingly simple thing, please forgive me. I never mean to blow up like that. Sometimes the pain medicine really messes with my brain, and I still hurt even with those medicines in me. All of this can quickly become too much for me to handle calmly once frustration is thrown in the mix. I don’t always have a good grasp on my emotions and for that I am sorry, and I just ask for grace and understanding.

To the friends who’s texts and calls I’ve missed or ignored, I’m sorry. I try to avoid texting or calling many people when I am doped up. I don’t always have a filter between my brain and my mouth. Also, my thoughts get all jumbled, and I can’t figure out how to make my point make sense. I get really frustrated with myself when that happens. It’s like I don’t have control over my own mouth.

To the friends who have stood by me through all I’ve been through and will continue to stand by me for what is yet to come, thank you!! I know I don’t say it nearly enough, but the support from you means the world to me. Thank you for being the ear for me to vent to and the shoulder for me to cry on. Thank you for your understanding and compassion. I don’t know what I would do without you!

Sincerely,

-ThrivingWithEndo

An Open Letter to My Teachers

To all my teachers, I have a chronic illness. I am not your typical student.

To all my teachers, I have chronic illness. I am not your typical student. My illness is invisible. You cant truly see my sickness, but it is there. I promise you; it is there. My endometrium tissue (the lining of the uterus which builds up and sheds monthly during menstruation) grows outside my uterus. It causes lesions and adhesions. This can cause copious amounts of pain and render me helpless. I can’t always make it to school. I’m absent often, and when I am at school, I am often doped up on my pain pills so that I can function. I am often easily frustrated, as I am in lots of pain most of the time.

To the teachers who’s homework I turned in late, I know my homework isn’t always done on time. Some days all I can do is make it through the school day. I get home and take my medicine and end up either asleep or throwing up. I promise I am smart. I just struggle to fully apply myself with all my health stuff going on.

To the teachers whose classes I always seem to be absent from, I wish I wasn’t absent so often. I have many doctors appointments, and there are days I literally can’t get out of bed, much less walk. I have to miss school for surgeries as well. I really hate being absent so much. Sometimes the makeup work overwhelms me.

To the teachers whose class I sleep through, I’m sorry. Between my pain and nausea medicine, I sometimes struggle to keep my eyes open. Sometimes I’ve been up the previous night in pain and throwing up. Sometimes it takes Advil PM to make me sleep and even then, I end up waking up in the middle of the night. Please be patient and lenient with me.

To all the teachers who have said, “It’s not an excuse, every girl has a period,” you have no idea the struggle I live through daily! When your uterus decides to turn inside out, come talk to me. You don’t know the first thing about my life. Until you have walked in my doctor’s shoes, you don’t get the right to decide my doctor is wrong. You have to respect my doctor’s notes and orders.

To all the teachers who have supported me and prayed for me, thank you! Y’all mean so much to me. I am so thankful for your support. I seriously don’t say it enough, thank you!

I say all this not as an excuse; this is my plea for understanding and patience. I wish I were a typical student, but this is my life. This is the hand that has been dealt to me. I trust that God has a plan and will guide me through this stormy gale. I only ask for grace and patience from you this year.

– ThrivingWithEndo

4 Tips for Surviving Bloating and School

The amount of bloating a female with Endo goes through is ridiculous and surviving a school day bloated can be horrific.

All my EndoSisters know exactly what bloating looks and feels like. Some of us have probably been asked if we are pregnant or how far along we are. I always feel like screaming in response “I AM NOT PREGNANT!! I AM 18 YEARS OLD AND STILL IN HIGH SCHOOL! AND ANYWAYS WHO GIVES YOU THE RIGHT TO ASK ABOUT MY PERSONAL LIFE?!?!”

So here are my top 4 quick tips for surviving school while bloated.

  1. Comfy pants!! Being comfortable in loose-fitting pants is my #1 tip! I go to a private school with a fairly strict dress code: collared shirt Monday-Thursday, T-shirts are allowed on Fridays. Pants have to be either jeans, khakis, or the girls can wear skirts. After explaining my situation to the principal, I was given approval to wear sweatpants when I am extremely bloated!
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My wonderful bloating survival pants

2. ThermaCare Menstrual relief patches! These can be a little pricey, but on days I go straight from school to my part-time job as a hostess, they are my only hope of survival. You just open the pack and press the sticky part onto your underwear and that’s that.

 

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Freaking next best thing to an actual heating pad

 

3. Diuretics! Midol or any other OTC medicine with a diuretic can be your best friend as long as you are okay with peeing constantly. In order to take a diuretic, you’ve gotta drink lots of water or else you run the risk of dehydration.

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Lots and lots of H2O

 

4. Essential oils! I swear by my essential oils for everything! Peppermint is great for nausea. Lavender is super relaxing and Eucalyptus can be used for anything you would normally use Vick’s Vapor Rub for! Find out what combination works best for you and then let me know!!

Drop a comment with other tips you have! Feel free to share!

Why a blog?

I was “unofficially” diagnosed at 12 years old. Doctors wouldn’t do surgery to officially diagnose me until I was 13.

Hey yall!!

I started this blog as a way to reach other girls and women battling Endo just like me. We are plagued by an invisible illness and most people don’t see our pain. I wanted an outlet to share my tips and tricks for surviving middle and high school with Endo. I hope that some young teens struggling with Endo find my blog and it helps them survive the already tough high school years. I am going to try to at least write one blog a week!

For my full story, click on the story link. Here is a quick detail-free version: I was “unofficially” diagnosed at 12 years old. Doctors wouldn’t do surgery to officially diagnose me until I was 13 and had had my period for a full year. I had excision done December of 2012; I was 13 years old. Dr. Albee at the Center for Endometriosis Care in Atlanta, Georgia, confirmed that I did have stage one Endo. Since then I have used essential oils, diet, hormone therapy, and pain medicine to make it to where I am now.

Thank yall for reading!!

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