I had been at Hillcrest Commons (Or as I liked to refer to it, Hell-Crest Commons) for 3 months. Jillian, the nurse practitioner overseeing my care, decided that we needed to have a meeting with all of my care team and my parents.
The meeting was an absolute disaster.
Every time I tried to talk to Jillian she insisted that my disease wasn’t as bad as I said it was and that she could get me off of most of my meds, off of the IV fluids, get my port removed, get me eating again, get my GJ tube removed, and get me walking with no assistive devices. She had shared this viewpoint with my parents and got them so full of hope that they were willing to do just about anything with me or to me in order to get me there.
This was a big problem.
The top specialists (on small fiber autonomic polyneuropathy) in the world had said that my disease was something that would get worse over time not better. They said it would be almost impossible for me to ever be able to eat by mouth again. That I would probably lose the ability to do tube feeding in the near future and need to switch to IV nutrition (TPN) as my digestive tract shut down more and more. They had clearly stated that the IV fluids were the number one treatment for dysautonomia and that due to the gastroparesis and malabsorption they were vital to my survival.
They had said we would just need to do our best to keep me comfortable with the medications we have available and will probably need to switch as many of my medications to intravenous form as possible as my digestive tract becomes less and less functional.
The top specialists had explained to me that I would eventually end up in a wheelchair and/or bedbound but that we could put that off as long as possible with a good PT/OT program and a lot of hard work on everyone’s part.
As much as Jillian’s idea that I could be 100% cured and have a fully normal life was a happier nicer picture, it wasn’t realistic and her plans for getting me there were deadly and involved a lot of emotional and physical pain. However, everyone loved her happy outcome better than than the doom and gloom outcome Mass General had given us and the one that I was going by as the nerve injury team at Mass General, spearheaded by Dr. Anne Oaklander, were made up of the top experts in the world on my disease and so I trusted them over anyone else, especially some small-town nurse practitioner out of Berkshire Health Systems in Pittsfield.
Going into that meeting I knew it was going to be everyone else against me, and I wasn’t looking forward to it at all.
My mom arrived first, I gave her a big hug but didn’t say much. Tensions had been running high between us over arguments between me and Jillian and her about possibly weaning me off of the IV fluids that Mass General had made very clear to her was something I would need for the foreseeable future.
Jillian wanted to start weaning me off of the IV fluids and increasing my J tube flushes through my feeding tube. This meant I would get less fluid through my veins (fluid that had potassium and sugar in it and kept my levels up and didn’t make me nauseous) and get more fluid pushed in through the tube in my small intestines (fluid that made me super nauseous and if I got too much of it would back up into my stomach and would either make me vomit or drain out my G tube and be wasted, but either way wouldn’t stay inside me to hydrate me).
I had told both Jillian and my mom that this was a bad idea and explained why but neither of them seemed to care. I even called Dr. Green’s office and had Dr. Green explain why it was a bad idea, but Dr. Green told me it didn’t seem to her like Jillian had been listening. She advised me to contact an ombudsman if she went through with stopping my IV fluids as that would be endangering my life.
The next person to arrive was my dad. I hugged him too, but he stayed stiff and didn’t say much. It hurts me that I don’t have a better relationship with my dad. I don’t understand why he refuses to acknowledge the fact that I’m sick. I just don’t get it. It would have been impossible for me to have faked all of the tests I’ve had. Yet he seems to switch from saying that either I’m faking all of my illnesses, or they’re all in my head and part of a conversion disorder.
You can’t fake a brain tumor that shows up in urine, saliva samples, blood tests, MRIs, and then physically gets removed from your head is followed by a marked improvement in urine, blood tests, and saliva samples. Skin biopsies are another thing that you can’t fake. My ten different gastric emptying studies all showed severe gastroparesis. There is not way to fake that,. I had multiple small bowel bowel throughs showing that my esophagus was delayed as well as my stomach and small intestine, At Mass General I had a Sitz study that showed extreme delay in my stomach and small and large intestine. you can’t fake a Sittz study, just like you can’t fake CT scans or MRIs, or bloodwork. All of my multiple endoscopies showing severe acid reflux and gastrtis, along with a hiatal henia, and a really slow, barely contracting stomach is another thing that can’t be faked. My EKGS and EEGs are another example of tests there were no possible way to fake. I’ve also had multiple ultrasounds showing cysts on my ovaries that often ruptures and gallstones in my stomach. Plus, even with all of that, you can’t fake physical exam findings, and all the symptoms I’ve experienced throughout the years in the same patterns and presentation as the five other people in New England that my Complex Care team at Mass General has followed who also have autonomic SFN.
Somehow though my dad still can’t grasp that I’m not faking this, and I’m terrified that he won’t be able to until after this disease takes my life and maybe not even then. It’s just so distressing. Sometimes even just thinking of the situation makes me cry. I don’t even think he realizes just how bad it hurts me and tears me apart inside. All I want is a solid father-daughter relationship with him.
At this point of looking back from the present and writing this in November 2020, I haven’t seen him in person since May, and I only saw him in May for a brief few minutes because I was at my grandmother’s house right after she passed. I don’t think we exchanged more than a few words. It’s been over a year since we actually sat down and spent any quality time together whatsoever. It’s been decades since I’ve felt like I could actually fully relax around him and talk about anything and just shoot the breeze. Ever since I got sick at age ten, our relationship has been damaged. He found out I’d been sexually and physically abused by a family friend for five years, since then guilt has been eating him alive. I got extremely ill and found out I had a life-threatening chronic illness. He rejected the fact that I’m physically ill, instead linking it to the abuse and his guilt and my mental health, and voila, an incredibly damaged relationship dynamic was birthed and has been developing from then on!
My dad has never been comfortable in medical facilities, so he was kind of just standing off to the side of my room in the nursing home. I was in my wheelchair with my IV pole in front of me so that when someone pushed me, they would push the IV pole too. My bear Haley was in my lap.
Sarah, the unit manager came into the room just then to let us know that Jillian and everyone was ready for us and that the meeting room was available.
“Do you want me to push Becca, or do you have her Mom?” Sarah asked my mom.
“I have her.” My mom said.
“Do you have the IV pole?” my mom asked me.
“Got it,” I told her.
I grabbed the IV pole with both hands after tucking Haley beside me and then the whole procession of us proceeded toward the meeting room which also served as a chapel.
It was a large open room, with a long fake wood table in the middle of it surrounded by a bunch of cheap office chairs. There was a sort of stand at one end with a cross and a bible on it. Another end of the room had a Chanukah Menorah on it and another part of the room had the Kinara for Kwanza on it.
Jillian was seated at the table. Of course, she had sat at the head, she always had to be in charge and in control of everything. Lynn was sitting on the left of Jillian. She smiled her gentle yet encouraging smile at me as I got wheeled in. Laura, my OT was sitting next to Lynn, she also smiled, her smile was upbeat and full of energy. That was also reassuring. The social worker, Tanya, was sitting on the right of Jillian, and Sarah sat down next to Tanya, and then my mom pushed me right up to the edge of the table, and she and my dad sat down near me.
We were ready to begin.
“Becca can have a bright future ahead of her, we just have to get her beyond this phase of needing to be sick all of the time,” Jillian began the meeting.
My stomach lurched as everyone in the room nodded their agreements with her.
“I don’t need to be sick all of the time,” I said. “I don’t want to be sick all of the time either. I have real diagnoses. The tests don’t lie.”
“I have two other patients here with small fiber neuropathy,” Jillian explained to everyone in the room. “They can eat on their own. They’re not on tube feeds or IV fluid and they can pee on their own. They don’t need to catheterize themselves. They don’t need oxygen. I just manage their neuropathy pain with nerve pain meds. I’d be happy to adjust Becca’s dose of Gabapentin or any other pain med.”
“I don’t just have regular small fiber neuropathy,” I tried to explain. “I have autonomic involvement, it’s different. I have small fiber autonomic polyneuropathy and mine is autoimmune caused. Maybe we should make another appointment sooner with the nerve injury clinic so they can explain some of this stuff to you.” I crossed my fingers inside my sleeves hoping and praying that she would at least agree to this.
“I think that might be a good idea.” Sarah the unit manager spoke up.
My mom agreed as well.
Ha! Now we had her backed into a corner. She couldn’t argue and say she didn’t need to consult with anyone because she knew everything this time.
“I’ll set her up an appointment with the nerve injury clinic and get her in as soon as I possibly can. I will also book the ride and then I will give nursing the details so that they can plan accordingly.” Tanya the social worker said.
“What we need to do is to get Becca weaned off of the IV fluids. There is absolutely no reason for Becca to be on IV fluids. I have seen her drink her clear liquids. She has a working J tube through which she tolerates feedings. Starting tomorrow we are going to be weaning her off of the IV fluids. I am not going to be accepting any arguments against it, I have heard it all, but I am the provider and I am making the final decision.” Jillian said.
“The clear liquids that I drink immediately drain right back out of me into the G tube bag,” I told her feeling myself beginning to hyperventilate with panic.
“I’m not going to argue with you about this,” Jillian said.
“The only reason I tolerate the J tube feedings is because it is strictly at 40 ml an hour. If you add any more liquid from there I’m not going to tolerate it, and if you add as much liquid as I would get for 12 hours worth of IV fluids there is no way in hell that I’m going to tolerate that. Plus there’s the issue with me not retaining potassium in my kidneys, you’re going to see that my potassium is going to drop dangerously low without the IV fluids. My blood sugar too.”
“I’m not arguing about this. We’re weaning you off the IV fluids,” Jillian insisted.
“Well, I think I just want to sign out of here and go home then,” I told her.
“You can’t come home the way you are now,” my mom told me. “We can’t take care of you when you have this many medical needs. It just wasn’t working.”
I felt like I had just gotten shot in the chest by a shotgun.
“What do you mean? What are you saying? I thought I was just coming here for rehab and then going home?”
“Well if we can get you off of the IV fluids and tube feeding and wheelchair you can come home, otherwise we have to make other arrangements.” My mom said.
“Like what?” I asked.
“That’s what I’m here for,” Tanya said. “We can try to get you in a group home once you’ve stabilized or we can try to get you in some sort of assisted living or independent living situation. But your parents just can’t keep taking care of you at home anymore, it’s too much for them.”
“We’ve raised you the past 24 years,” my mom explained. “You’re supposed to raise your kids and then have a life with your partner, dad and I are always taking care of you and we need time to spend with each other now. We need a break, it’s how it’s supposed to be in life. The way things are now, we can’t leave you home alone, someone always has to be there. Dad and I can never go on dates, we can’t go on vacation, we can’t do anything because we always have to worry about who is going to take care of you. We need to have a life too. You’re an adult now, you need to have a life separate from us and we need to be able to do things together again.”
“But if I wasn’t sick I could live at home?” I asked.
“Yeah, because then we wouldn’t have to take care of you all of the time and we could have our own life.” my mom said.
“What about getting more people in to help take care of me?” I asked.
“That’s just too much to have too many people like that in the house, dad doesn’t want you in the house with all those tubes anyway. It’s too hard on him to see you like that.” my mom said.
I felt like I was being rejected, I felt like my safety nets were literally being ripped out from underneath me, which they basically were. Ripping sobs were tearing out of me and I couldn’t stop them. They were shattering their way through the room.
I didn’t live at home anymore. At the moment the only place I had to call home was Hellcrest Commons. My safety nets were gone. The panic streaking through me was making it hard for me to breathe, I just couldn’t stop crying. I knew my mom was not on my side about the IV fluids, but she had always been my safety net, even if she did occasionally shoot at some of the good guys. How could she kick me out like that? How could she abandon me like that? How could she be so callous? Didn’t she love me enough to want to take care of me forever?
On my Facebook groups and in many other situations I’d run into if a child is disabled the parents take care of them into adulthood and as long as they possibly can. They don’t just do a dump and run. They don’t just send them to a nursing home and then just tell them they can never come home again. How could they do this to me?
My dad, I wasn’t surprised. I don’t think he thinks about how I feel about situations very much. He just does his tough love thing and that’s it. He abandoned me a long time ago. I’ve pretty much given up on him. But my mom, how could she do this?
I couldn’t stop crying. I felt so completely unloved. So completely alone. I felt like I had no one in my corner. I found myself wishing I was dead. Wishing I had never been born. Suddenly I didn’t care anymore that Jillian was stopping my IV fluids, even though I knew that the end result of that was death. I knew I wasn’t going to argue about it anymore.
Instead, I just sat there crying and shaking and completely inconsolable as the meeting continued around me, but I was just frozen with the fact that I had just been abandoned by my parents and kicked out of my house for the sole reason that I was sick with a disease that I had no control over.
“Are you going to be ok Becca, are you going to be safe?” Tanya asked me at the end of the meeting. I was still crying softly to myself and not aware of much of anything else. I just nodded.
The meeting ended. I gave my mom and dad quick hugs. My mom hugged me back and then when I hung on longer she kind of pushed me away. My dad stayed stiff. I just cried harder as Sarah pushed me back to my room where I told her I wanted to be by myself with all my teddy bears so I could just kind of process everything. It was all just way too much.