Hi Everyone 😊
I hope everyone is hanging in there, staying well and sane through these uncertain times. I recently had two experiences that I want to share with all of you.
I’ve had some strange medical things going on since mid-June that have taken me to many doctor appointments, a visit to the ER, specialist appointments and a CT scan. The issue originally started in my pelvic area and then grew into my abdomen. If you are like me, you will do just about anything not to go to the doctor about an issue around the pelvic area. I want to stress that I am totally fine! But this experience reminded me of two important things that I want to share with you, my fellow Warriors.
1) Check in with yourself – And check in often.
Driving alone to my CT scan I began to feel nauseous and nervous. It took me back to when I was 17. Lying in a confined machine to get an MRI to locate my absent uterus and clues as to why my menstruation had not started. I knew something was off, but we did not have the diagnosis at that point. I just laid there cold and alone. Between the loud sounds of the machine, the MRI tech would stop and talk to me through the intercom system to make sure I was okay. After checking in, she would then go back to starting the machine and let it go for a few more minutes before checking in again. The process went on and on. At one point after she checked in on me, she must have forgot she was on speaker as she loudly exclaimed, “ I can’t find it” over the intercom. I was in the MRI longer than expected and hearing her say that she unable to locate my uterus was unsettling. A few weeks later I would be diagnosed with MRKH. I will forever remember that MRI appointment and those four words I was not supposed to hear.
Fast forward to 2020. I was getting a CT scan this time and not an MRI, but the feeling was the same. I could not get that memory out of my head as my body rolled into the CT scan. It was almost like I was dealing with my diagnosis all over again and it shook me.
This appointment provided me with an important reminder, that we all need to check in with ourselves. No matter where you are on your MRKH journey or how steady you may feel. MRKH can rattle you when you least expect it. So be kind to yourself. Remember how magnificent and special you truly are. And don’t forget all of the battles you have won since then.
So please. Check in with yourself. And check in often.
2) Be your biggest advocate. No one will advocate for you like you will.
When I checked in at the front desk for my CT scan, the women looked at my orders from the doctor and said, “that’s not right.” She then explained to me that the doctor must have wrote the orders wrong and called my doctor’s office to get permission to change it. My physician who sent in those orders is knowledgeable of my MRKH. She sent the requests in a specific way for a reason. I was confident what the doctor sent in was correct. The front desk attendant explained she received permission from the nurse’s aide to change it. I said nicely but firmly, “the nurse’s aide isn’t familiar with what has been going on for months and doesn’t have knowledge of my condition. I would feel more comfortable if you spoke directly to my doctor.” While I believe the front desk attendant was doing what she believed was right – I know my condition and the complexities that come with it. There is a reason the doctor sent the direct orders that she did. I was told I can speak to the imaging aide about it and I was shooed off. While I was waiting I texted my brilliant business partner, trusted confidant and dearest friend, Amy. She was up to date as to what was going on and why I was getting a scan. She said to fight the new order or I would have to come back and get the scan done again. Her response confirmed my initial feeling. I knew I was going to have to advocate for myself and explain that the original orders sent from my physician were correct. I had a friendly debate with the radiologist. I was not backing down. After explaining my concerns, she gave in and did the original imaging that was requested from my doctor.
I felt victorious! It was a small win, but still a win. It’s an important reminder that no one will advocate for yourself like you will. You know your body and the uniqueness of your body better than most people. You need to be your biggest advocate in life and for your health. Don’t be afraid to speak up and advocate for yourself when something doesn’t seem right! Your future self will thank you for it.
I truly hope all of you are happy and well! Sending you virtual hugs from Maryland. May you continue to stay sane, find joy in the small wins, check in with yourself as often as you check in on others and always advocate for yourself. You deserve it (and so much more). 💛