The Great Medigasm -Part 2

All the right things…

In part one, I spoke about the medical experiences that have led to clinical PTSD and anxiety about medical appointment, especially when meeting new doctors. I probably expressed how if it all possible, I always take a second adult with me to medical appointments because there will always be more than one of them, but it’s so easy for them to say you hurt something wrong unless you have a witness present. But this time I expressed that I met a new doctor who gave me what I described as as a new term: a medigasm.

Even as I finally finish the last of the labs on the last possible day I can do them before my appointment, after putting them off since March because of fear of going to a lab among the virus, I at least am able to take a little bit of comfort in knowing this is my new doctor, and now I can see him virtually. Finally, a rheumatologist is on my case. With a neurologist. It’s like medical Christmas! Now prayers that nothing happens to the insurance and all of these doctors remain on the same or another plan together. I’m starting to just have anxiety about losing doctors now.

Below are all of things he said that, each on its own was shocking enough to rock my world, but together, left me speechless and wondering if I was about to wake up from a dream. I felt as if someone had told him all the right things to say to make me think I was crazy, or that I was on candid camera. If you’ve experienced all that is the world of a professional patient, you will understand each one of these statements and why they are shocking. Imagine getting them all at once.

1. “I have several patients with your condition.”

What? I have never even met anyone else with my condition. My pulmonologist has one other patient with it. That’s the extent of people I even know exist in the area with this condition. It is diagnosed in 1 out every million people, so many doctors don’t even meet someone with it, and it isn’t in their norms wheelhouse unless they’re done a felllowship at the Cleveland Clinic, where this condition is studied, as my hematologist did. But even the rheumatologists I met had to admit they did not have any patients with this condition. So hearing that this doctor has several, while also hearing very clearly that he understands this disease the way you would imagine doctors understanding medical conditions without having to research them. That alone was enough to shock the conscience.

2. “This is not about my ego, it’s about your health.“

I’m sorry can you repeat that? Louder for the doctors in the back.

3. “I’m an expert in medicine, but I’m not an expert in your body. You are the expert in your body. I need your expertise to be able to do my job.”

OK, now you’re just poking fun at me, aren’t you?! If not. I have a liar of doctors who could use your guidance!

4. “I am never going to treat you like you’re crazy.”

I am not sure that’s entirely medically responsible. If I wasn’t crazy before, I am most definitely crazy now, after dealing with a bunch of doctors who are not you. I am heavily medicated for your protection. You have been warned. But thank you for giving me the opportunity I wish others had given me to try listening.

5. “I get the sense you can hold a lot. I can tell you are in more pain than you are telling me. I have a feeling by the time you get around to asking me a question, it’s way out of the spectrum of what is normal and I need to listen.”

🥺🥺🥺 I have said these words to people, trying to get them to understand my pain tolerance. How did he know? I didn’t tell him. But this has happened repeatedly, to the point that most people who know me enough to know anything about my medical condition have probably heard about this issue. It has been repeated in many settings. The most telling was the one when the kiddo‘s father went after the nurse to explain that my tolerance for pain was much higher than normal people, including his, and that if I am crying, that means something is wrong. Got to give the man credit there. 🙃 He was not wrong.

6. “If you’re telling me something is wrong, I don’t care what the numbers say; it means we need to keep looking to find out what is going on.”

Holy shit. I mean, just holy shit. Excuse my language, but there is no other thing I can say at this point that expresses my shock that this guy would actually pay attention to something if the labs come back showing that I am healthy.

7. “I’m so sorry a doctor treated you that way. What an awkward situation to be in.”

OK I’ve heard that’s weird. I’ve heard a sort of stunned silence because the doctor didn’t know what to say about what would happen to me. I’m sure as a professional, they were wondering in the back of their minds if I did something to provoke it. But this is the first doctor who actually acknowledged comprehending how completely uncomfortable my experience would have made ANY patient. He actually recognized the emotion I would’ve felt in that circumstance.

8. “Thank you for bringing me these records. These will help a lot. They’ve given me a lot of background information to work with.”

He said this while actually looking at the records and making reference to what they said! To be contrasted against the many doctors who say thank you for bringing them records and stuff them into the back of the file, never to be seen again. And he actually understood why they were each significant and why I brought those specific records and not every record I have. This showed me that he understood my disease. That is a rarity in itself.

9. “Oh you came from this doctor? I love him! I work with him all the time. I love working with him.”

One of my dreams is that all of my doctors will communicate with each other the way my late husband’s doctors communicated with his oncologist at meetings to discuss his treatment plan. This doesn’t happen for people who have an autoimmune disease covered by a rheumatologist, who is usually primarily set up to treat arthritis type diseases, and only sometimes deals with other areas like vasculitis. I still don’t understand why there is not a specific position to deal with autoimmune diseases like an oncologist, and we are left to see specialist after specialist and try to get them to communicate with each other, which sometimes leads to inferiority/superiority/insecurity issues and may even cost you a doctor. You would be surprised how many doctors operate like teens or young adults when it comes to inferiority/superiority complexes, and will not hesitate to put something in your medical record out of spite, that will hurt you when subsequent doctors review it. You can tell me this doesn’t happen, but as a retired professional, I know this happens. I would hear about previous attorneys, and I would carefully evaluate the client to try to find out if the other attorney was actually a bad attorney, or if it was a bad client and likely to be a repeat. It’s a valid concern. And a very irresponsible and immature way for a doctor or other professional to respond. It was such a relief for this doctor to understand and acknowledge how Trumatic it was to go through that experience when I was already going through a Trumatic medical experience to begin with.

10. “You’re on this drug? Already? I was one of the first doctors do use that drug when it was released.”

😳 Are you serious!? 😳 It turned out he had been trying to figure out how to get his patience on the auto injector, which my pulmonologist had just gotten me approved for. He was very excited to know there was a way to do it, and was very excited that I was already on that treatment because that would’ve been his recommendation. He knew extensive information about the studies, and from there on, his knowledge surpassed mine. That’s the way I like it.

There were so many wonderful things he said, that I’ve decided to make this into a three part blog. I have written a lot of blogs and posts complaining about doctors, and they have taken a lot of space. But never have I had so many good things to say about a doctor that I ran out of space twice. But this is that time, and I’m willing to give it the time and space it deserves. Because I’ve noticed good doctors have no idea what other doctors treat us like. And we deserve better! So demand it! Wait for it. It took me 3 years. One step at a time!

Stay tuned for “The Great Medigasm! Part 3”!

The Surgical Weight

I lost my husband to metastatic melanoma skin cancer, which eventually spread to his lungs and brain, taking him from his two amazing daughters (and the rest of us). While it’s likely he got the cancer after a bad sunburn when he was 16, he never had the spot checked out. One day he was with me in one of MY appointments, and my doctor looked at him and told him to get that checked out because it was cancer. Needless to say, I got him in to a dermatologist within a couple of days. That’s when the nightmare began. He lived with the diagnosis from early 1997 through December 3, 2000, around 2:45 am.

During those four years, we did a lot. There was a surgery to cut the spot out of his cheek. This one was scary. His parents and I were there all day, and finally decided to go eat, after the waiting room rep urged us. We were not too happy to find out the doctor had come out to speak to us, we weren’t there, and she was not able to tell us what he said. It would be another few hours before we learned it had spread to his lymph nodes, and the incision went much farther than anticipated, leading to the extra hours of surgery.

The next major surgery was to remove a tumor from his brain. This one went well. Which is not to say it was easy. It’s never easy. You have to give up all control, lean on your faith, and pray those who DO have some control are successful, and guided by God’s protective hand.

Knowing you are helpless, and at the mercy of the grace of God and the doctors.

I remember he was in the room one of two local police officers who had been shot had just previously been. His older daughter was six at the time, and she didn’t want to leave him. I still remember sitting on the steps outside the hospital, crying with her, waiting for her to calm down before I would drive home with her.

Whenever someone I know is experiencing things like this, things I can identify with, things that trigger my own reserves of anxiety about the situation, I feel almost as if I’m going through it with them. The same is true when someone loses a spouse. I went to a funeral for a woman I had never met, because our spouses were married and I went with him. I remember crying at the funeral as I watched the husband and kids being greeted by people, and nobody understudying why, since I didn’t know her.

What people don’t realize is this kind of trauma doesn’t go away. It stays with you. During those tears, I wasn’t mourning her death. I was looking at the people in front and thinking about what they felt at that moment. And just before. I locked myself in the bathroom before my husband’s service, and friends had to talk me out. I didn’t want to go. I don’t know why. I just didn’t. And when I saw our stepdaughter wandering by with tears, I snatched the opportunity, and took her to her room, where I stayed with her until it was over. Again, crying with her. She didn’t want an angel daddy. She wanted the dad who took her to school on his motorcycle. She was six years old. She doesn’t remember most of this, because she has blocked it out.

So I knew how much this family desperately didn’t want to be where they were. I also knew they wouldn’t want to experience the next few weeks. Or the next few months. Or the whole first year of firsts, or the even more traumatic second year, when it’s not expected to still be so significant for you. But also the moments where you realize, this is never going to be over. This is your new normal. This is forever.

The grief cycle is not kind. And the grief attacks are much more frequent in the beginning years than in later years. All of this, I knew was in their future. I knew what dad was walking those kids through and a lot of what lay ahead for them. I cried for them. My heart broke for them. I still put flowers on her grave at the cemetery my grandparents are buried, since it’s a distance and we don’t get to go often. I can’t leave without stopping by the other one to acknowledge the mom of these kiddos and send them a picture. They didn’t want a mom in on a headstone in a picture. They wanted the mom who was alive. But sometimes, the part of someone who is no longer alive has to live through you instead of for you.

Today a friend had to play the surgery waiting room game while her very young granddaughter had open heart surgery. I can’t explain it. Once you have been there, you can’t dissociate from what you know they are experiencing. I mean, you can, but like all things we dissociate from, we eventually have to deal with it in some way or another. I held my breath all day, imagining what the mom and dad must be going through at every passing hour. I watched the page they set up for prayers, waiting for an update, and praying with all I had that my friend wouldn’t be experiencing a tragedy in the middle of all of this chaos. It’s just too much.

Nothing is made easier when children are involved.

The thing is, I didn’t realize I was holding my breath. I didn’t realize the level of anxiety I took on, again, not because I knew the child directly, but because I knew what the wait was like. There is nothing like it. It wasn’t until they said she was out of surgery and recovering in ICU with good vitals, that I found myself in tears, and realized I was literally holding my breath much of the day, waiting. I had dissociated again.

I realized there is a part of me that is still grieving my own experiences. In praying for my friend not to experience a tragic loss, I was reliving the waiting room all over again. It’s truly one of the hardest things to go through. You can do nothing except pray and wait. You can try to distract yourself with social media (wasn’t an option for me 20 years ago), or puzzles, or books… but you’re not really there. I sometimes wish they could just put the family to sleep, also, so we can just to sleep and wake up when it’s over.

The waiting room window. Staring at nothing in particular. Just trying to get through the hours.

But this is the part we, as surviving family members, have to carry. How many times had many of us wished we could have traded places with him, to take on his pain, his stress, and his sadness, even if it only relieved him of a little bit of the weight he was carrying. But we can’t. We can only wait, and pray. It’s hard. We want to be strong for our family member, so we hide our tears, and try to smile a lot. We cried in the car when he couldn’t see us. I cried at work. His daughter cried at school. We all cried all the time, but normally not in front of him.

We can’t carry what is someone else’s to carry, even when it’s too much for them, even when it’s not fair, and even when we desperately want to. Hospice helped me understand this was a need by family members who feel otherwise helpless. Helpless and at the mercy of the doctors, of God, of the nurses, and of anyone who extends some compassion when you need it most.

Trying to distract yourself.

This… is the part we carry. For those few hours, they get to go to sleep, and wake up when it’s over. We don’t. It’s the only time in their lives that WE are truly the ones carrying the weight of it ALL. WE are told what to expect. WE are told when there is an update. We are told when it’s over, how it went, and even when they’re in recovery. Sometimes when they wake up, it’s a family member who has to task of updating them until the doctor makes it around, unless he had to leave after the surgery. Then it’s 100% on us to deliver the news typically only given to a patient by the doctor. That is a lot. It’s heavy.

But the thing about it is, this is our only chance to do what we want to do. We want to carry some small piece of the horrific journey for them. This is that chance. In the waiting room. The surgical wait. The surgical weight. For just this brief moment, WE can carry the stress for them. Looking at it this way, it was an honor to carry him for those hours. I would have carried many more if given the opportunity.