Part Fifty-Six: It’s All So Much
Mr. Rugby’s obsessive compulsive thoughts have reached new, crippling heights the last two weeks, resulting in a trip to the emergency room on Friday and a dozen calls to neurologist offices the four days prior to that trip. I asked friends and family and complete strangers on Facebook for recommendations, and I started calling, begging for an appointment this month. The first few practices I called were taking appointments in July. So, I just kept calling. “Dialing for dollars” as my friend Trisha would say. Finally I scored an appointment on June 14, then another on June 4, and finally one on May 23rd. It gave my son a few minutes of relief to know he’d be seeing a doctor sooner than later, but only a few. After that few minutes passed, he was right back to coming apart with fear. I found him sobbing on his bedroom floor saying “I don’t want to die” over and over again. He’s convinced he has ALS, and no amount of reminding him that he’s been convinced of other things in the past that have turned out to be completely erroneous is helping. And so I got him in the car and took him to the ER where they found approximately nothing wrong with him and encouraged me to keep his neurology appointment.
Like I’d cancel any of them.
And then there are the enormous veins in Mr. Lucky to Be in His House and Not the Big House’s left leg. They’re a result of the KT Syndrome he has and they’re swelling. Again. And they hurt. A lot. Again. It was time to see the vascular specialist two years ago, but he wouldn’t go. He doesn’t want to go now, either. But the pain is intense and while he insists on going to work - where he’s on his feet all day - he’s in tremendous discomfort and, big surprise, they send him home. And the poor kid feels terrible about it. I ice the veins. Give him Tylenol. Prop his leg up. He’s physically uncomfortable and miserable because he’s missing work. It’s not just the paycheck, although that’s important, it’s that he loves seeing people. He needs that social connection. But now he’s home. In bed. Fighting depression. And vowing to go in again today, God love him.
It’s all so much. I ache for my sons. I would trade places with them both if I could. Maybe today will be better. I hope so. I am so tired. I just keep stating to cry.
I know all of you have your own problems. Thank you for letting me vent. This newsletter isn’t even entertaining any more. And I’m not sure I’m going to keep writing it. Thank you for listening.
Dear Susan, it's really hard to write about something when you are in the thick of it. Just surviving takes up all your energy, and those who haven't been through it can't understand. Does Mr. Rugby see a psychiatrist and take medication? I've had anxiety, a panic disorder, and depression since I was 19, but I didn't start taking medication until I was 28. Breathing techniques just weren't working anymore and I spiraled into agoraphobia and nonstop panic. Even then, I waited two weeks before seeing the psychiatrist my therapist had recommended. I was scared of medication, so I resisted. At my first appointment, I was prescribed Paxil for long-term relief (it takes several weeks to build up in the body and become effective), and Klonopin, for immediate help. The Klonopin worked overnight and I was my old self the next day. All I needed was a small dose, .125mg (1/8 of a milligram). Benzos get a bad rap because they can become addictive after long-time use, but they are very effective until the benefits SSRIs or SNRIs kick in. It can take some trial and error to find the right medication and dose, but for me it was 100% worth it. My apologies if this feels like advice (which you didn't ask for, so I don't mean it to sound like it is), or if you've already been down this road and nothing worked. Please feel free to dm me for additional information, or just for support. I've pretty much been through it all. Sending hugs, Amy 🥰
Susan I cannot imagine the level of exhaustion, mixed with deep love and compassion that you are running on to make it day to day. I pray your sons find the help and support they need to break free from the pain and suffering they are experiencing.