When you look at a rose, do you notice the beautiful petals or the thorns? Just like a rose, life is beautiful but it can still cause pain. Does that mean you focus on the pain? Do you look at the thorns on a rose and ignore the flower?
At the end of each stem of thorns is a rose. Granted, in the case of long-stemmed roses (some of the prettiest ones), you have to go through a lot of thorns to get to the flower.
Okay, enough of this metaphor – hopefully you get my point.
My stem of thorns is HSP-Vasculitis and it is a long stem.
Thankfully, I am (finally) on the road to recovery. Sometimes the recovery process seems harder than the initial illness. When you first get sick, it sucks. A LOT. But you get medication and your body is pumped full of help and you improve. Initially, you see improvements on a regular basis. Then, once you start to see the light at the end of the tunnel – you plateau. In my case, my wounds healed but I still have scars all over my arms and legs.
Scars take time to heal.
A lot of time. It’s a SLOW process.
If you are lucky (sarcasm), like me, and have to continue your medication; you start to see the effects of being medicated for long periods of time. Prednisone, for example, causes your face to become round, increased insulin levels, weight gain, shakiness, increased heart rate, possible loss of bone density, etc, etc. Originally, I thought, “I’m barely being affected by Prednisone. I’ll be fine. The side effects won’t bother me.” Now, there isn’t enough contour in the world to make me look at my face and not miss my cheekbones and jaw-line.
My jeans are too tight. I can’t cut carbs or sugars because I will get light-headed due to high insulin levels. Et cetera.
Luckily, I am finally starting a slow taper of Prednisone. If all goes well, I should be off medications by August 3rd.
Not only does your body make the recovery process hard, but the people in your life can too. They don’t mean to but they do. Don’t get me wrong; I LOVE my family and friends. I would not have survived this without them. But, with time, people start to run out of things to say to you.
They know that “It’ll be over soon” is no longer enough because they said that months ago. People grow tired of hearing you complain about your illness. I don’t blame them – I get tired of complaining. I try not to do it too often. People you aren’t close with forget that you are sick. Sometimes that’s a blessing; other times it’s exhausting.
Explaining yourself is not fun – it’s another reminder that you are sick.
And the people who tell you: “You are so strong” or “I don’t know how you could do this.” Thank you for your support but I don’t really see it that way – but
(sincerely) thank you.
So far, I think I have done what I’ve had to do. I did what was necessary to get healthy and not get depressed. I’ve tried to help others to not worry about me. Sometimes I have to put on a front – act like I’m okay. I’ve done a good job too. Its good acting practice, right? In that sense, I guess I am strong. I’m tough. I’m a fighter. I will not let this beat me. But anyone can do this if they put their mind to it. Every one of you reading this post can be as strong as I am – if not stronger.
You just have to have the will to fight.
I’ll be honest: I’m really struggling to stay patient with this condition. I’m constantly checking my body for new ulcers. I am an anomaly. HSP-Vasculitis is a childhood disease. I shouldn’t have it. The doctor’s don’t know if tapering Prednisone will cause a relapse. We don’t know if working-out will cause more harm than good. I have to force myself to be patient and take baby steps and just see what happens. I will backtrack if I need to – push forward if I can. This is my new normal and I have to learn to live with it (for now).
I hate that I’m gaining weight and I can’t workout (without my feet going numb or popping blood vessels due to circulation issues) and I can’t fully diet. All the work I put into my health and muscle-tone before I got sick is gone but I will eventually be able to start over – a blessing in disguise? At least I can start over? – I’m still trying to find the light in that situation.
I’m scared that I will relapse.
I’m scared that this will turn out to be a chronic problem.
I’m scared my scars won’t ever go away.
I’m scared the extended use of Prednisone has caused other health problems.
I’m just scared.
But it’s going to be fine.
I’m going to get through this. If it turns out to be chronic, I will deal with it one day at a time. I will lose the weight. I will learn to bear my scars with pride.