I've lost my words

Today is a somewhat typical Tuesday around here...I'm home not feeling well watching movies while my husband winds down his work day in the other room.

It has been a challenging year. I've made no bones about about it, and won't try to hide it. A few weeks ago at a followup appointment with my awesome rheumy I found out that the aggressive treatment we've been using isn't working. The news was and is devastating, and I'm not quite sure that I've recovered quite yet. I am still emotionally scarred from my hospital stay, but had been trying to get through. Gym membership, home physical therapy, regular physical therapy, walking up and down stairs, hanging out with the dog, reading self help books, doing the whole therapy thing, but I really couldn't shake the nightmares of the almost month in the hospital.

So on the day of that fateful appointment, I went in expecting anything but that. I had been experiencing several symptoms that I had before being hospitalized, but I was in a healthy state of denial/recovery. Hearing that the same thing could and might likely happen again....I still don't have the words. Frankly, hearing that I had decreased activity of unknown origin in my brain was less frightening. I just had to convinced people I could drive, and I was good.

I've been in a bit of a tailspin ever since. The self-help books fell to the side, physical therapy was put on hold due to some other issues, and my bed became my best friend. I've cried more than I would like to admit, and I've been a real bummer to be around. I stopped responding to emails, texts, phone calls, etc. I even started canceling doctors appointments that might reek of more bad news.

(Not Me)

I wish I could say that I came to some profound revelation that I am going to live each day to the fullest, that my symptoms and fear have gone away, and that everything is back to normal.

It's not. I am thankful that the people who love me have stood by me, and for the amazing friends who have stepped up to the plate and wouldn't let me fall back in that hole. The ones who made sure I took a nap daily, the ones who made great jokes in poor taste (asses of fire being one of my favorite), the ones who tried to get me out of the house and never stopped calling/emailing/texting. The ones that DIDN'T say things like "God only gives you what you can handle" or that "God must think I'm strong enough to handle it" - probably because they didn't want to get a punch in the face :)

I'm thankful for my husband for never giving up on me, holding me when I cried, helping me work through the emotions that came from the re-diagnoses and the emotions that still come from the massive amounts of steroids I'm on.

To answer the question - what's next? We've increased my steroids to what feels to me to be an intolerable amount and increased my immunosuppressants. What does that do? In theory, reduce inflammation in my colon and will eventually reduce symptoms. It also - duh - suppresses my immune system so I constantly have a fever and cold.

A few weeks ago the fog started to lift, and I started venturing out of the bedroom. My goal each day is to get out of bed, make it, get to the living room and do something. Whether it's go food shopping, watch movies, make it to an appointment - anything. I've been decently good about it, but it's hard.

I'm not giving up on life - quite the contrary. I'm trying to find my way forward. I'm trying to find my way to wellness, and to a modicum of happiness.  I'm reading books I enjoy, bought a crap ton of makeup, subscribed to Ipsy.com, started reading more closely the blogs of my online buddies, tried not to be bitter when I couldn't go to Fitbloggin13, and lived vicariously through my blogging buddies. I have spent tons of time with my poor dog who is terrified of the fireworks that insist on going off every day. And obviously, I've spent time with my husband who has taught me card games, got me into a couple of video games and keeps me stocked with goodies and movies.

What I've learned...because if nothing, I'm always learning....is that before you get to the idea of fitness and wellness, you have to get your head on straight.  You have to believe that it's going to get better, that there is a light at the end of the tunnel (enter ass jokes here). Am I there yet? No. But I'm sure as hell working on it.