I’m here?
I’m alive. I’m here. Well, I wasn’t here, but now I’m back.
Life has been……okay? Weight Watchers has been…….nonexistent. Sarcoidosis has been……better? Then worse. Then better again.
This is going to be a long post……you have been warned.
Let’s start with sarcoidosis….since so much of the other stuff stems from that. I’m doing better! I’m not in remission yet, but I have been successfully been tapering.
I had a few scares about a month ago and I definitely panicked. My cough got worse for a few days one week and then a couple weeks later I started having some elevated temperatures. I’ve a few bad days where the fatigue is just, well, exhausting. But most days I feel pretty good. I have a mild cough that most likely will stick around awhile/forever.
I’ve been training myself to put myself and my health at the forefront of my thoughts. It took some work but I am finally to a point where my mind registers when I’m in a situation that needs to be changed. For example, I used to be able to be around cigarette smoke. And while it was annoying, I would just deal with it. Now I realize that I can’t be around the smoke and I remove myself from the situation. It doesn’t sound difficult, but it really has taken some adjustment. And its still a work in progress. This past weekend I was around campfires and fireworks and I thought I avoided the smoke but my cough definitely was worse the next day so I wasn’t as on top of things as I thought I was. But I’m learning!
The prednisone still blows. I’m down to 15 mg a day from 40 mg. I can definitely feel the difference! I’m not nearly as jittery as I was before. And the hunger has started to calm down. Every time I taper to a new dose my symptoms show up for a few days and then go away. That is when the panic of a relapse kicks in. Luckily my pulmonologist is great and has been super helpful in talking me off the ledge. He also believes in a slow taper so it is giving my body time to adjust to the new dosage before continuing on. This means I’ll be on the meds longer, but it won’t be such a shock to my body.
The side effects are still terrible. I still have some crazy mood swings and I learned the hard way that I shouldn’t spend time in the sun. Oh, and not only do I still have a moonface, but I also developed the dreaded buffalo hump. Don’t google it…..it will give you nightmares. Just trust me when I say that I have a small hunchback at the base of my neck. Thank goodness I have long hair to cover it. I’ve been avoiding getting a haircut for this very reason. It has gone down slightly with the taper, but it still has a ways to go before its back to normal. Ugh.
All of this, plus the weight gain has caused some pretty terrible body image issues. I will find out the exact number tomorrow, but I’m fairly certain I’ve gained over 30 pounds since I started on the prednisone. Yes, you read correctly….thirty pounds. It’s no wonder I feel like shit. My clothes don’t fit and I hate the way I look. I’m pretty miserable. I know I should have continued attending meetings and tracking my food, but I gave into the emotions and just ate my feelings. You would think after 3+ years on WW I would know better.
So tomorrow I head back to Weight Watchers. I’m going grocery shopping tonight to stock up and fill my kitchen with good food. I’m going to get to WW early to weigh in and have time to chat with the leader. I’m really glad I never canceled my membership. It was kind of a waste of money, but I think it would have been much harder to come back if I had actually canceled it.
Other than all that negative nancy jazz, things have been ok. Work is busy but good. The summer is finally here in Chicago and I’ve been enjoying the nice weather. Jeremiah and I took a couple weekend trips to visit family, celebrate a friend’s wedding, and unfortunately attend a funeral. We also had a fantastic long weekend over the Fourth of July at my parent’s summer cottage in Michigan. All in all….not too shabby.
I need to get back in the habit of posting here. I think journaling really helps in the weight loss process so I should be more proactive about it. I also think it will help me process this disease better if I put pen to hypothetical paper.