NAMI Convention

Today has already been full of hard and wonderful things.

This morning I woke up at about 0540 and was crazy hungry.  Luckily for me, the hotel I’m at has a Denny’s just across the street.  So I went to Denny’s and enjoyed a very unhealthy, but protein filled breakfast.  When I finished, it was just 0630 so I went to get a decaf frappacino and it was delicious.  I walked back to my room and relaxed a bit before going down to the first session I was planning to go to for the day.  It was Research Developments for Depression.  The doctor talked about biomarkers and how that technology is still in its infancy but when it’s closer to completion, it’ll mean big things for people living with Depression.  He also used the word disease when referring to Depression which oddly comforted me.  But then he started talking about STAR*D (Sequenced Treatment Alternatives to Relieve Depression) study.  It’s basically what it says in the title.  There are different sequences and different medication tries with each different step (four total)  You can read more about it here.  After trying the four steps, 2/3 of the participants have reached recovery.  Then I got to thinking.  That leaves 1/3 of the people still sick and living with an intolerable (at times) illness. I’m one of those third.  I’ve tried many combinations of meds.  I think my latest psychotropic med count is 29?  I’ve tried 29 different psych meds since I began my psychiatric journey almost two decades ago.  I had regular seizures (also known as ECT) because they usually help people with treatment resistant MDD.  But they didn’t help me enough to warrant the risk.  I’m taking a dangerous MAOI anti-depressant right now because it’s the only medicine out of all of them that I have tried that alleviates enough of my symptoms to live a bearable life.  But that’s exactly what it is.  Bearable.  My mood (on a scale from 1-10 {ten being the best}) runs about a 5 or a 6 on a good day and a 3 or 4 on a rough one.  I’m having more good days lately but still, the level of relief isn’t what I would like it to be.  I’d love to experience some 8s or 9s.  You know?

So I am getting upset in this session and have to take a time out.  I went back to the young adult drop in room, crying my entire way there.  I took a chair and sat out on the balcony, breathing in the not yet unbearably hot air.  I deep breathed for 10 minutes and then texted Dana (who is one of them who is in charge of the YA Track) and asked her if I could talk to her.  She came down and took me to talk to a social worker in the next room.  I talked to her, took an ativan, and tried to calm my mind.  Talking about not being happy with where my recovery is helped a bit.  I was just so broken at the time because what is there for me to try?  I’ve tried tons of things and the only thing that helps doesn’t help a lot.  It just makes life a bit bearable and decreases active suicidal thoughts.  Which is something.  But I don’t think it’s enough.

I missed out on the next session I wanted to go to because I was still trying to calm myself.  I didn’t want to go while I was still in a fragile state because it would be much easier for me to have another breakdown.  So I just reminded myself to breathe and breathe some more.  I reminded myself that I’m not alone and there are many other people with treatment resistant Depression who are exactly where I am.  Then I told myself while it does SUCK, at least I can see that it sucks and that there’s the possibility of getting better.

I went out to lunch with a few of the young adults.  Had some good food (with really bad service attached to it).  I was feeling a bit dizzy while I was sitting at the restaurant so I took my blood pressure just to check.  Turns out it was 140/99.  A little bit high!  But I have too much pride to fall back too much from the group on the way back or say, “Hey guys, go on ahead, I need to take my time walking back. I might even catch a cab (I know it’s just a few blocks but I really can’t).  Instead, I kept up with the pace for the most part.  Then we got back to the hotel and I went straight to my room.  Took my bp again and it was 150/105.  I laid down on my bed, put my feet up on the headboard and relaxed.  Did some deep breathing.  In 30 minutes, my bp had come down about 30 points.  I decided that since I didn’t have a session planned till 1630, I would go to the pool to get the relaxing benefits of the water.

So I went to the pool.  At the pool I wore my new, super awesome swimsuit and got compliments on it.  I also met a little boy who has the same name I would have had if I had been a boy.  He was a beautiful, vibrant boy who just happened to also have Down Syndrome.  We tossed a ball back and forth together.  He showed me how he floats.  The lady who was with him made sure that when he was wiping his eyes off that she wiped the eyes off of the turtle floaty that he was wearing to keep him afloat.  All of these things made me smile.  He swam to me and I held him.  He saw my scar from my port and said, “What’s that?” in a very inquisitive tone. I told him I had to have surgery but it made me feel better.  He said, “I’m sorry it hurt but it’s better now,” and patted it.  He was a very sweet boy and made me smile when I really needed to.

That leads me to this part of my day.  I’m going to go to an In Our Own Voice demonstration.  If I can find a training time in Iowa, I would love to be involved in that program. I can’t wait to see what it’s all about.

Anyone who is reading this, thanks for your support.  It means the world to me.  Without all of you, there’s no way that I would be here, in San Antonio, learning things I could never imagine.  So thanks.

Have a great rest of your day and don’t forget to smile.  You never know when it’ll make someone’s day.