Virtual Patient Day - October 16, 2020

I enrolled myself in the American Endometriosis Association's Virtual Patient Day so I can learn how to own and manage what I have.

I'm free to be me with my quiet smile and my eyes filled with deep wonder for life. I decided to partake in #endofound's Annual Patient Day this year to help myself. I have endometriosis and I'm learning to not only accept it, but I am also learning about the disease itself so I can help myself have a better quality of life. I wrote this for a contest that's part of the seminar!

While I was listening to the seminar, I was chatting with my mother on Facebook and she told me that my periods when I was younger were sometimes painful. She also said my periods were also sometimes heavy, which I vaguely remember. I have a memory of being in Ottawa for Show Choir in 2005 and going shopping at a mall for a grad dress when I got my period. I flew home to Alberta while on a period and it was heavy. I remember wearing black pants and excessive pads just to hide it. My mom told me that our doctor at the time always thought she was overdramatic when it came to my need for medical attention because of my neurodivergency. If I hadn't made an appointment with another doctor back in 2017 and demanded a referral, I would still be in the dark today.

Note: Sugar and carbs that can convert into sugar can be inflammatory. YIKES.

Notes from keynote speaker Lexie Stevenson:

-Would an internal ultrasound help? I've had pain and bleeding lately that makes me wonder...

-omg, endometriosis grows back worse?

-depression and anxiety can be a result of having endometriosis. I was having really bad pain attacks when I annoyed the hell out of people in a social club I am part of and that pain might explain why I did it. I didn't feel like myself during those moments and now I know why. Damn endo.

-Whatever causes inflammation in your body in terms of food, go without it for a week and see how you feel. It might mean having to give up candy bars (cries). I have already given up oats/cheerios, honey, peanut butter, cinnamon, huge amounts of lettuce, spicy food, pop tarts, dairy, onions, and other bad food habits. This does work, as I have tried it.

-Give yourself a before bedtime routine and WORK OUT to help yourself with mental health stress.

-Advocating: find silver lining in everything, learn that hysterectomies don't cure endo and they are not worth it, learn to tell the doctor that there is something wrong and they need to figure it out, passive communication doesn't work; you MUST use assertive communication when talking to doctors. 

I made a list of things to bring up to my doctor the next time I see her because with the new information and what I am learning here are helping me to put things together in my head. 

Dr. Haas

-having a trust relationship with a doctor.

-it's normal to feel scared, embarrassed, anxious, tearful.

-trust that openness and honesty are part of communication with your doctor.

-trust gut intuitions.

-don't be afraid to admit pain.

-think about this: what has endometriosis done to affect your quality of life?

-write down what endometriosis has taken from you and what you cannot do because of it.

-tracking your symptoms: keep note of where pain is, how long it is, etc.

-organize, gather relevant records, and bring your stuff to doctor.

-recognize abnormal symptoms as being something worth paying attention to.

-girls and women with endo learn to take on a lot of pain = quiet suffering.

-help trained physicians not minimize women's symptoms.

-diminish bias, push through it.

-destigmatize our symptoms.

-Lupron makes people loopy, angry, etc. 

Questions

Virtual Intake Appointment - October 15, 2020

I had my appointment with the pain clinic in a city three hours away from my house, but it was done over Zoom because the actual clinic is sharing space with a COVID call center right now and there's not always going to be room for appointments. One of the things the nurse started out by saying was that Dr. Topping wasn't entirely sure it was endometriosis, but that the diagnosis became sure when she found endo inside of me via surgery. Also the fact that the current two medications I am on are working and helping me be able to function is another reason why everyone believes it is endometriosis. The nurse explained about what the treatment through the clinic would involve and I agreed to it. I would start by taking two courses via the phone and then go up to the bigger city for the physical assessment after those were done...

Creating a legacy - September 30, 2020

I take a religious class for middle-aged singles on a weekly basis and this set of lessons is geared towards a book authored by Moses in a publication called the Pearl of Great Price. Tonight, the class touched upon the creation of the Earth. In discussing the Creation, we touched upon the terms "multiply and replenish the earth" and I used to think that meant simply having children. Because of my condition, that may prove difficult, if not impossible. I cried because every time something comes up that reminds me of my circumstances, I cry and I make myself remember that there is more to a woman than having children. 

During the lesson, I learned some interesting Hebrew terms about multiplying and replenishing the earth.

Rabah: multiply

Parah: fruitful

Male (pronounced may-lay): replenish (to fill/be full)

I also reasoned to the others in my class that one doesn't necessarily have to bear children in order to replenish the Earth. There are many children born to the Earth who need positive influences in their lives because they don't have them. These children need people who have lots of love to give and a passion for providing a positive example that can be followed. Children and youth need positive examples desperately and those who cannot bear children for whatever reason have the opportunity to fit that role and so they should seek to. Men and women were both counselled to have dominion over the Earth; in other words, they were counseled by God to take responsibility for themselves and each other. Taking responsibility for each other involves serving as mentors to those who lack them and need them.

The whole thought of 'creation' is interesting because so many can create so much and even if someone can't create a specific thing that is expected of them, they are perfectly capable of creating other beautiful things and should be encouraged in doing what they are able. One must find joy in what they CAN create and have pride in what they can give. People should also avoid being ashamed of what they cannot create, as those limits in their abilities are not their fault; it is what life has given them to deal with and dwelling on the negative will only waste time and energy that could be used to create other types of masterpieces that will serve as a legacy to generations to come. Even if you do not think what you can give will ever be enough because it's not what is expected of you as a woman, what you can give will be enough for someone...enough to keep them going and sustain them away from dark thoughts that often come with difficult circumstances. A legacy doesn't necessarily have to involve bearing children; it can involve being a positive influence on the lives of others through persistent use of work, care, talents, love, and time.

My endometriosis is REAL, but it's thankfully young - September 30, 2020

I phoned the clinic a few days ago in hopes of learning more about my endometriosis and what stage it's at because I learned through research that there are actually 4 stages, with Stage 4 being the worst. Dr. Topping sent me a message via the nurse: I have Stage 1 endometriosis. I am cautiously optimistic that it will not get worse, but it very well could and that will mean more action. 

THE REFERRAL TO THE PAIN CLINIC WENT THROUGH! JOYFUL DAY! - September 28, 2020

I finally got a call from the pain clinic in Calgary and the referral finally went through! The lady on the phone said that the first step will be an intake interview over Zoom on October 15th with a nurse to see where I am and we'll decide what steps to take after that. The meeting, she said, cannot be in person because the clinic is currently sharing space with a COVID call center and space is limited. The person on the phone was also sympathetic to the hell I've been going through and is happy that I will now be getting the help I need. Living with a chronic illness sucks, especially during a pandemic.

Switching to Monthly Treatment! - September 11, 2020

When I went to the clinic today, I called in and said I was having a bad pain day, which was very true, and they let me come in. I got to sit in a soft chair til it was time to get the shot. When I saw the doctor, I asked about switching to another medication cause pain was horrible, but she wants to keep me on the current medication right now and it will now be a monthly treatment because the three month treatment is not available. She also promised, after I asked, to look into where my referral to the pain clinic in Calgary went, as they are apparently open now. I also got a few pictures of my visit this time:

Adjustment - September 1, 2020

11:15 A.M.: I just got off the phone with the pharmacy...they just told me something dreadful.

The perscription shot I usually get every 3 months is now not available (out of stock or something) and so they had to switch me to one that I have to get monthly. Men plan and God laughs.