It’s my third day that I’m laying in bed, tethered to a heating pad because I can barely stand up long enough to shower. I need help from my husband to get dressed and then back into bed. For three days in a row, I’ve needed the support of my colleagues to help me plan and execute lessons for my kids. I am in pain. Excruciating pain that no one can seem to figure out definitively. I feel such guilt that I have made my husband Atlas and now he is carrying the weight of my world on his shoulders. He leaves for work every day worried sick about me because I can’t stop crying. I don’t want this view of me to be the last one he sees of me before he heads out the door, but I don’t know how to stop myself.
Steffan and I voted on Tuesday and then made our way to Annapolis to see the specialist of whom my gynecologist recommended. We went under the impression of determining a long-term pain management plan, as that is part of his title, “pelvic pain specialist”, and with a list of questions about the looming hysterectomy in my future. I’m 32 and the idea of having organs removed from my body scared me greatly…especially because in my eyes, these are the ones that make me a woman and now the thought of us ever being able to have a child is gone, aside from adoption. I am happy with that plan for bringing a child into our family, I’m just wished we weren’t forced into that position. Rational or not, it’s not like they can be replaced, and the thought of needed hormone replacement therapy at my age is not ideal in my small world view. *Side note: this was only our third visit to this specialist, but in our eyes he showed his true colors more and more each time.
We asked our questions about everything with this surgery and everything leading up to it: how this would impact my hormones, my libido, my pain and how to manage it until I’m ready, and recovery time. He had no concrete answers to any questions. It was all circular in nature; for example: when I asked about recovery time: he said, “Well that all depends on you. I mean you could be dancing in two days or it could take 4-6 weeks.” We were both taken aback by that answer, as it’s quite a wide range…and I’m a teacher who needs to plan accordingly to use my sick days. He also said it depended on my job. I said, “Well I’m a teacher, so I’m on my feet all day and moving around to help kids, and up and down by desks to work with kids, and up and down stairs to go to the office, etc.” Basically, I never sit. He responded with, “Yeah, but it’s not like you’re a firefighter or anything.” I was speechless. I just stared and looked at my husband. At that point, he knew I was panicking inside. I didn’t know what to ask since he just demeaned my entire profession.
Steffan asked about long-term pain management and he said, “We’re not doing anything for that. Is that why you thought you were here?” I said “Yes! That’s the whole reason we made the appointment!” How am I supposed to live tethered to my bed for the next six months without pain management? His only suggestion was a drug called Lupron. In all my husband’s research, he has found out so much about this drug that is utterly terrible. The basic premise is to induce menopause until I actually experience it with the surgery. This drug was originally designed for men with prostate cancer and failed. My doctor loudly refuted my husband and said that’s never been the case, despite it being able to cause diabetes, convulsions, epilepsy, impotence and heart problems (directly from Lupron.com). For women, in the short-term, it can cause convulsions, headaches, bone-thinning, fluid retention, heart or kidney problems (again, from their site). Sounds like a great drug that I’m dying to take. I asked what other options he had for me, since at our first visit he said, “he lived out of the box”. He said that was it. I could opt for the 1 month injection or the 3 month one.
So let’s recap: drive 1.5 hours to be demeaned, yelled at, and left with no options for any immediate relief. I got in the car and just started crying.
When I got home, I wallowed for an entire night. We got home at 5 pm-ish and I went right to bed. I am feeling abandoned by the medical system.
I couldn’t stand the thought of going back to that doctor…I called an got a referral to a surgeon in Baltimore with whom I’ve had surgery before. I called the Annapolis office and had all of my records transferred. I am starting all over again and it feels utterly like Sisyphus pushing his boulder up the mountain one more time. How am I going to do this?
Yesterday, I finally managed to make it to my family doctor who was willing to get me medicine until I can get to Mercy and see the compassionate specialist I’ve seen before. Every time I left his office, he would hug me and tell me it will be okay. He said, in 2012, the last time I saw him, he had such respect for teachers…polar opposite of what I’ve been enduring.
I’ve had a lot of people tell me the pain is psychosomatic…it’s mainly in my head and my stress is making it worse. I know what my pain is. Because of this part of our journey, I’m losing hope in the medical system. For those of you Golden Girl fanatics like me…yes, I love them. There is one episode where Dorothy has to travel across the country and see a plethora of doctors because no one can figure out what’s wrong with her. She knows she’s sick, her mother and friends know she’s sick, but because the doctors can’t see it, it must not be there. I feel like Dorothy. Turns out she did have something wrong with her, but it took a little empathy and compassion and someone who is listening to hear, not to respond to figure it out. I’m still waiting for that person.
In the meantime, I’ll lay here with my heating pad, my mini-dachshund, Walter; my snoring Newfoundland, Frank and watch endless episodes of Parks and Rec. I am forever grateful to my loving husband who stands by my side and makes sure I am taken care of, even when I feel like I can’t do it anymore. I am grateful to my friends and colleagues who send thoughtful messages, help me with plans, and even take over my classes. You’ll never know how much it means to me. I am thankful to my in-laws and grandparents, who have checked up on me constantly. I am thankful to my mom, who even though she lives 10 hours away, offered to drive down today, spend basically one day with me and then drive home, because she too is a teacher and needs to be in school on Monday.
I will get better. Could someone tell me when? Please…