Saturday, January 30, 2016

6 months out.

  It has been 6 months since the death of my oldest. 6 months of crying and questions. 6 months.

  I remember when he was 6 months old. Now I have to go through the milestone of 6 months after his death.

  I think of all the things I want to say to him. How sorry I am that I got sick when he was young. How sorry I am that I passed it on to him. How sorry I am that I chose that man for his father and that he inherited his illness too. How sorry I am that I couldn't be a better mother. I spend hours thinking of all the ways I let him down. Then I start to remember good stuff, happy memories, loving times. I remember how beautiful he was when he was born, how cute he was learning to crawl, and how big and bright his eyes were when he was smiling. I remember holding him, rocking him, singing to him. I remember taking him to the park, chasing him, and listening to him squeal in delight. Pushing him on the swings, teaching him to ride a bike. I remember that he and I would talk all the way to daycare, a 30 to 45 min drive, with no radio on. He would always ask me to go faster and race the other cars and I would make racing sounds. He was so happy.

  I remember when that changed. Looking back I can see when he started acting different. I thought it was just adolescence but now I can see the mental health issue, the schizophrenia. He never did tell me about it. I can see how he was pulling away from me. I thought it was because I had remarried and had more kids, but if I look carefully I can see when he was fully there and when he wasn't. Still I got him out and we went places. Camping, museums, caves, concerts, hikes, swimming, yoga class, Tae Kwon Do class. I tried to be there as fully as I could even though I was disabled from my illness. I have to hold on to the good memories or I will drown in my regrets.

  I need to keep fighting my illness. I need to give the other kids the same amount of memories, take the same amount of places, love them just as fiercely. No matter how badly I want to give up, I can't. I have to keep going, keep fighting for the kids I still have.

  I need to remind myself that his death wasn't my fault. It is not my fault he has paranoid schizophrenia, or that he inherited my HEDS and stuff. I know more was going on but that wasn't my fault either. I tried to help him and I know he appreciate it and loved me because that is what he said to me in the message he left for me. He wanted me to know I had been a great mom to him and that his last wish for me was that I "go on with happy memories of our time together". I have to hold on to that. I have to. 

Monday, December 21, 2015

Disabling Anxiety

I always knew I had anxiety. It was one of the first things I was diagnosed with. OCD, PTSD, social anxiety, agoraphobia, pain avoidance, generalized anxiety disorder, complex anxiety disorder, etc, etc. I have been given all these labels. On top of that, I have Dysautonomia. That also gives a physical cause to anxiety. What I didn't realize was how bad my anxiety controlled my life. The constant irritability? The constant anger? Anxiety.

Previous attempts to treat my anxiety failed. The meds made me feel funny, made the fatigue worse, made me sleep all day, made me feel hung over the next day, or made me gain a lot of weight making my hips hurt worse. Why is this attempt working? Because I treated the Orthostatic hypotension first. I started taking the Fludrocortisone first. So now my blood flow is right. That right there lowered my anxiety and reduced the anger, but it wasn't enough. I was still an asshole.

It is an unbearable thing, watching your personality change against your will. Becoming someone you never were and never wanted to be. Watching all your dreams and hopes go down the drain as you change into someone evil and disgusting. It makes me wonder how many people out there have these issues but are brushed off as just being jerks. Or how many parents are angry and violent when it was something they couldn't control? Of all the help I have received over the years, not one doctor or government agency looked for a physical issue. I get angry sometimes, thinking about all the hell my oldest and I went through when I first became disabled, knowing that this was the issue all along. If they had know or seen and treated me accordingly, could I have gone back to work? Could I have gone back to the happy mother he had had before? Would he still be alive?

I have to remind myself that I , and my kids, are a genetic anomaly. This isn't something a regular doctor is going to see or suspect. How could they know? Only 1 in 5,000 people have EDS. Fewer than that have Dysautonomia. The more I learn about myself the more I realize what a genetic fuck up I am. I have an aberrant right subclavian artery. .2 percent of people have this and most of them have down syndrome. I have red hair and blue eyes. A combo only seen in 2 percent or less of the population. I have fructose malabsorption syndrome. They actually think that 30% of the population has this. There are other things but these facts alone make me realize just what had to come together to make me so unique. And so tortured.

The constant pain is still there. Anything they could give me to treat it would make my digestion worse. I don't want to develop gastroparesis like my mom so I'll hold off. For now, treating the anxiety has made a huge difference. Buspar and Xanax 3 times a day. That is what is finally doing it. Do you know what it took to get a doctor to give me those meds? Sheesh.