Month: May 2018

Prednisone is an Evil Necessity

Wegener’s, along with many other autoimmune diseases, require that patients take prednisone to insure survival. It sucks. I’m thankful that it’s kept me alive, but I absolutely hate the side effects. I have gained weight, and lost sleep. I’m moody all the time. Anyone whose been on high doses of prednisone will agree. It’s a necessary evil.

For me, the worst part is the weight gain. I’m stuck in a never ending cycle. In October of 2017 I was put back on a high dose of this evil drug. I’ve tapered down since then, but my body doesn’t seem to have noticed. I have gained 17 pounds since October. I actually gained that by February. I’ve been trying to eat healthier, and be mindful of what I consume. However, it’s not working out as smoothly as I’d hoped. It seems simple enough. Eat more vegetables and not so much processed foods. Well, when your sick with a disease like this, it can be a lot to get up and cook. Some days I can’t even get out of bed. Then I beat myself up because I’m feeling so much pain or lethargy. It’s an awful place to be in mentally.

I know we are supposed to “love the body we are in” blah blah blah. I don’t. I hate who I’ve become. I hate that my husband and I met right before I was diagnosed and he missed my healthy years. I hate that my kids are not getting the best me. I have, without trying, beat my ego to the ground. I don’t even want to go do things because I feel too fat and out of shape. So then, I get motivated and make a plan. I’ll eat healthier and walk. I start out great for a week or so, but then BAM! I am hit with a flare and I end up in bed again for days. I ask the kids to just grab something easy for dinner. And then the 5 pounds I lost, become the 10 pounds I gain. Depression sets in, and the cycle continues.

I yearn for the days when I just had to deal with losing weight to look good for summer. I miss the fat I used to think I was 10 years ago. Now I am on this damn drug with this stupid disease, and fighting for my life in ways I never would’ve imagined. I just want to be healthy and keep up with my family and friends. Is that so hard to ask?

It’s Okay To Not Be Okay.

Sometimes it’s okay to not be okay. I’ve had a rough time lately. I’ve had a lot of pain, and a cold. It’s sometimes hard to tell where one ends and the other begins. I won’t go into it, but it’s sucks. Not only do the symptoms suck, but the emotional baggage that goes along with it does too.

I feel like I’m wasting my life because I hurt so bad. I used to push myself harder, but it seemed to make it worse. I need to get out of this cycle and live again. I’ve been sad a lot lately. This has become a lonely life. I have amazing friends and family. I just don’t feel well enough to get out. I want to. I make plans. I just hurt so bad I want to die (not literally). I miss have having something to do (work, cheer). I need to find something to do.

I am trying to wean down on my pain meds. I’m doing pretty good at it.

I know this post is pretty sad and depressing. I honestly needed to just vent. I’m just tired of being sick and tired. I want to be the old me again, or better yet a new and improved me. I did buy a day planner. I used one when I worked and it really helped me to reach my goals. My phone is easy to just ignore. So I’ll see if this day planner will help me to get out of bed, write more, and maybe even eat healthier and exercise?! 🤞🏻

I must overcome this.

Well, I’ll leave you with this quote from Theodore Roosevelt:

“Courage is not having the strength to go on; Its going on when you don’t have the strength”