Reflecting on preparatory experiences - October 28, 2020

I reflected on my situation with endometriosis and God knows what else tonight and I realized that being involved in my dad's experience with cancer PREPARED ME FOR MY OWN ILLNESS. It was around the time that he got sick that I remember having concerning symptoms and just starting to explore my own health because I was concerned that I might have cancer too. I was put on birth control and ended up focusing all my energies on helping my parents with my dad's cancer. 

When he found out his cancer was terminal, he had just gotten out of a week-long stay in rehab for his alcoholism and they didn't catch the cancer then (or maybe he did and didn't tell). His response was to return to drinking and say, "F**k it, I'm going to die anyway." He drank, he smoked, he mixed booze and pills; he was aggressive and violent and threatened to kill everyone at least once. He emotionally and verbally abused his family and allowed his friends to do the same and fully expected us to put up with it gracefully because he was dying. 

I realized that me being exposed to all of that was not for me to make peace with the man who hated my mere existence simply because I was born disabled; it was for me to learn how not to be when it came to dealing with my own condition. So far, my illness has given me anxiety, pain, tears, and a bit of anger, but I have not resorted to drinking, drugs, wanting to hurt anyone, or verbally abusing others. I am frustrated, however, by my family's reaction to this: my mom doesn't want me to talk about it and has told me I make every conversation involve it and my stepdad has his own things going on. My brother asks my mother about me, but he doesn't wish to talk to me because our dad told him I wasn't worthy of love because I was born disabled. My mom also makes a point of telling me that they cannot afford to and don't want to come with me when I go deal with the treatments. I want to find 'family' or supportive people who actually have the energy, willingness, and capacity to be supportive and help me deal with this. I bought Ancestry DNA for myself as an early birthday present, so maybe that will help me find family who are capable of being supportive.

Like, when I told her that my appointments were scheduled for a week before Christmas, the first thing she said was, "What are we supposed to do about Christmas?" Like, no support whatsoever. I know there isn't a lot of money in the family, but she talked at me as if I were a problem.

A road to greater appointments - October 28, 2020

I just got booked in for a physical assessment and other appointments related to my health condition at a diagnostic and treatment centre in Calgary about a week before Christmas and I had a feeling it would be that soon, but it was still very much unexpected. I know basic information about the issue I currently have, but I still struggle with it and I'm wondering if there's more to it than I originally thought. Please, y'all, can I ask for prayers, thoughts, and well-wishes that I can get everything arranged properly and that they'll be able to figure out the full extent of what is going on with me physically? Even if you don't pray, I would sincerely appreciate just being kept in your thoughts. When I told my mom about these appointments, the first words out of her mouth were, "What are we going to do about Christmas?" Nothing about how sorry she is that I have to deal with this and promising to be there for me; just whining about Christmas and saying that she and my stepdad cannot afford to come to Calgary with me. I am frustrated by my family's reaction to this: my mom doesn't want me to talk about it and has told me I make every conversation involve it and my stepdad has his own things going on. My brother asks my mother about me, but he doesn't wish to talk to me because our dad told him I wasn't worthy of love because I was born disabled. My mom also makes a point of telling me that they cannot afford to and don't want to come with me when I go deal with the treatments. 

PERSONALISED CARE GROUP AT NHS ENGLAND AND NHS IMPROVEMENT - Step One - October 26, 2020

I started this course because I am embarking on more extensive treatment for endometriosis and I wanted to be more aware of what's involved in patient care.

Intro Videos

I watched a video called 'Mitchell's Story' and Learning about Mitchell's story and also learning how his condition affects his family makes me a little more mindful of how to handle my own condition in terms of how I include my family. I currently suffer from endometriosis and am about to go into deeper treatment for it and I've been trying to keep my family included in the decisions, but my mom basically said it comes up in every conversation we have and she's tired of hearing about it. She was the main caregiver for my dad when he was dying of cancer and that was six years ago, so I think that has burned her out in terms of being able and willing to serve as a caregiver anymore. I love her, but I also know I need to be more mindful of how my condition might be reminding her of the past and trauma associated with it.

Video: How does the NHS work in England?

Virtual Patient Day - October 17, 2020

Soothing the Pains of Endometriosis: Mind & Body

Corinne Idzal

-We need to soothe the body. In soothing the body, we reconnect with the body.

-When we think of our body and think of it as our enemy, it makes it worse. We need to know that we have the power to feel a little better or feel a little worse. 

-We can have pain and know we are going to be okay.

-It is understandable to have fear.

-Put breathing exercises and self-conversation into your morning routine.

-You have to train your muscles to contract and relax at the right time.

Follow Your Gut: Endometriosis & Nutrition

Lilia Bolgov

-Give yourself time, space, and kindness.

-Find ways to have physical activity in your life for weight and mental health.

IBS is BS when it is Endometriosis….Culprit in the misdiagnosis, and years of delay.

My mind kind of drifted at this point cause of tiredness...

Endometriosis Advocates: Supporting yourself and others with endo

-The most important thing you can do is advocate for yourself.

-Look yourself in the mirror and say, "You are not crazy."

-To advocate for yourself, you have to believe yourself and trust yourself.

-Don't let people tell you how you feel and what is going on with you.

-Speak up for yourself.

-Reach out to someone, know you are not alone.

-A doctor's ego and accountability is never more important than your health.

How to advocate with your insurance

Latia Lee

-I'm not sure how this applies to me, as I am not in the States.

-Be patient & persistent. Don't let doctors forget about you.

-Advocate for yourself because you deserve treatment.

The Endo Life Cycle: Endo through the ages

-People talking about their histories.

I was personally 9 years old when I started menstruation and it was all confusing to me.

-It can be a great mistake to not talk about endometriosis.

-You're not weak or broken. It's not your fault. Don't feel guilty about the illness. You are still a wonderful person even with chronic pain.

-You are not deficient because you are in pain.

Q&A

Issues associated with endometriosis:

-doctors not recognize the disease

-doctors wanting to not touch the disease

-Glands may go away, but the fibrosis does not go away.

-Endo belly may continue even after excision surgery because not all the endo was removed.

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...