I haven’t felt much like writing. I haven’t felt much like doing anything, really.
My husband had surgery on his shoulder over the Thanksgiving holiday and it brought back every memory in the world for me when I was down and out after three surgeries and my eventual Lupus diagnosis. Except this time I was able to at least be the caregiver, instead of being the one laying in the hospital bed.
Of course he didn’t need to stay inpatient and he’s already back to work. The differences between us are like night and day. I’m so happy he’s healing well and I’m so happy his recovery is going smoothly. We deserve at least that.
The kids have handled it well and I’m so very proud of them. I think the only one having issues is MOM. Being the over-emotional, idiot I am. PTSD? Who knows.
I want this nightmare put past us so badly I’m having real trouble focusing on taking things slow. I want it all NOW and I want it all OVER WITH. As my body slowly gets better, and fatter from the steroids, I want my old body back IMMEDIATELY and I want life as it was. Exactly as it was.
I’m willing to make a few compromises. I’ll slow down with certain things. I will. I’ve learned to listen to my body. I’ve learned to eat better. I’ve learned to do a lot. But I want these extra 100lbs OFF ME NOW and I want to feel like a human being again.
I do not feel human. At all. Every day is just a waiting day. I wait for my real life to start over again.
Sure I try to live in the now and enjoy moments with the kids and with my husband but mostly I wait and wait and wait for my body to come back and my life to come back. Why I equate the two, I’m not sure. Other than it’s where my comfort zone seems to be. I’m uncomfortable physically. Rolling over. Washing. You name it. I’m uncomfortable in public. I feel like myself on the inside, and then wonder why people treat me differently…and then remember I don’t look the same on the outside.
I see myself in the mirror and I look hideous. I am obese. I am filled with drugs that have puffed me up so awkwardly I can’t even fit into clothes that are MADE for larger women. That’s how this steroid weight comes on…wrong. All wrong.
By January 1st I hope to be off the steroids. If that is the case, I plan on creating a very strict diet with my doctor and I doing what I am allowed physically in order to get this weight off. Sadly, I have not been eating poorly. So I am scared that once off the prednisone not much will change.
I’m scared of many things.
Yes, I’ve learned to love who I am, but it’s a different kind of love. I know I can be better- healthier- because I’ve seen it. I’ve been there. I realize this drug has saved my life and I am thankful, but now I want to move on. I want the side effects gone. According to my doctor the risks have now outweighed the benefits. No pun intended.
So the drug cocktail continues to be tweaked as I continue to make progress. It’s just so slow. And the slowness is killing me worse than the disease. Two years are a long time to wait to get your life back. So I’m taking back the parts of my life I have control over.
I guess I just thought we’d be further along by now. I guess this holiday season I thought I’d be in some slinky dress ready to make my debut to the world again, running 5ks with my husband and having him show me off.
Instead I want to hide. I’m embarrassed. I’m embarrassed for my family. I want them to be proud of me. I WILL make them proud.
First by beating this disease and second by getting as close back to the normal ‘me’ as possible. And I swear this on my life it will happen. I’ve never been more determined. Ever.
Now to find a way to make my body cooperate.