My Ugly Friend

I have to say, I feel like I am almost an expert on prednisone, patient wise at least, as I have been taking it intermittently for 8 years now. Currently, I am on my longest usage at almost 14 months. Starting at 60mgs per day and varying. Daily now I am on 15mgs per day and holding.

The first time I was prescribed prednisone my lung function was extremely low. I had trouble doing ANYTHING. Just rolling over in bed would leave me breathless. I took the stairs in my house on my bum because I couldn’t vertically climb them. I hadn’t been examined by a specialist at this point, but during a pulmonary function test, my stats were so low I was immediately hospitalized. I was given oxygen and prednisone and within days my breathing became easier.

I thought at the time – this is a miracle drug ! It not only helped my breathing but because the dosage was so high, my energy level was supernova. Little did I know then within a very short time I would gain 40 pounds, my cheekbones would disappear, as did my eyes aka moonface & the mood swings were unreal. What moods sank in the most was depression with bursts of anger & sadness.

Prednisone did save my life – so was absolutely necessary. The side effects, for anyone who has been on it for more than a few days, were incredibly difficult. Not just for me but my family as well. I still break into tears from a hug, a look of sympathy, a kind word. Anger props up over someone eating the last bite of chocolate in the house, the shoes not being aligned properly, any comparison from others saying “well I have taken prednisone and it’s not that bad”. She-Hulk emerges and look out for the shit-storm. I try to explain it’s the side effects of a very strong medication but not everyone is understanding.

I have been told that I cannot blame everything on the side effects of prednisone. Ummm, ya, I can. When you have been on it as long and as much as I have, please judge away. If not, I would prefer you say nothing. Or even better something supportive …  What ? Supportive ?

If you have never been on this drug long term, you can have no idea what this drug does to a person physically & emotionally. I have discussed this with my therapist and he laughs when he hears someone has downplayed the emotional tole that prednisone takes. He is a specialist for patients with chronic illness so is very familiar with this drug as it is prescribed for many inflammations. He said he has had patients that have halluncinations, seeing a marching band cross their rooms, or believe they are King Henry VIII. Comparatively, I guess I am not too bad off. It still makes me cry or freak out when I try to explain but am dismissed.

Because my lung disease is rare, I have yet to meet anyone with it or be treated for it. My lung specialist is determined to get me off prednisone (except in rare occasions which I can accept). I have tried Imuran, which my body rejected immediately. I am now trying Cell Cept, with prednisone of course, but this drug takes 8-10 weeks to see if it will decrease or stabilize my lung inflammation – which we are all hoping it does. At that point, I can start to taper off prednisone.

Which takes me to my next point about prednisone, the tapering process. I am not sure which is tougher, being on it or being taken off of it. I am exhausted all the time. I have no energy or will to participate in anything. This adds a layer of guilt of what a bad mother and wife I am, no matter what my husband and kids say. They are the true heroes of my life – living with me cannot be easy.

As hard as I try, I am just so tired that all I want to do is cry. Part of the depression from the prednisone, part of my sadness at this situation. I would, as any one of us with a chronic illness, change this if I could. The lung disease is scary and I have no control of when the inflammation is going to flare up. But my ugly friend prednisone is always there … a necessary evil.

I do have amazing support from close family & very close friends who are understanding and have seen the effects of prednisone first hand. They let me cry, create a fury train, rant and rave, sleep, visit anytime I ask and remind me that they love me no matter what. I have given all of them the option to walk away and God bless them, they have stayed by my side. I cannot explain (and here comes the tears) what these people mean to me. I cannot express my gratitude enough.

This a short version of my experience with prednisone. Anyone who takes it as part of of their daily med has my respect, because you my friend, are a warrior. This is not an easy road, which is very much an understatement. But I have hope. Hope that my ugly friend will only be necessary for a few more months. That I will be able to say, thank you for saving me. You are kind of a bitch, but I do appreciate what you have done for my lungs. Now go back where you came from and don’t let the door … well, you know !

Image 1:
Image 2 :

The troll under the bridge

Anxiety is part of everyone’s daily life. It’s the degree of the anxiety that can change from person to person. Driving to work, feeling as though you are late and the boss might be ready to jump down your throat will cause a feeling of anxiousness. Going out with a new person for the first time can also cause anxiety. It’s the amount of anxiety and the ability to copy with the effects it plays on your mind that make a huge difference.

My therapist has told me that anxiety is fear based … that in order to overcome any type of anxiety, one must face these fears repeatedly. That caused me to feel anxious. The idea of facing the things I am most frightened of is not a pleasurable thought. Sitting here, in my bed, writing, safe & sound – this feels good. It’s calming and safe. Oh, that word … safe. Seems to be the opposite of anxiety. But is it a coping technique?  No. It’s an avoidance technique. But some times denial is not just a river in Egypt.

What I find most disturbing is the anxiety attack which seems to hit for no apparent reason. I have awoke to an anxiety attack … full blown. I was breathing way too fast, sick to my stomach, full shakes everywhere, sweating, knowing this was it – the final curtain. I was having a heart attack & my husband & kids would find me on the floor of my bathroom. Focusing on the the anxiety made it even worse.

My husband woke up and determined because of my shortness of breath, it was my lung inflammation acting up. He decided we were going to the hospital. I have anxiety surrounding hospitals, which is a story for another day. This just increased my laboured breathing.

My daughter, who is finishing her first year in nursing came in to see what with all the commotion was about. Luckily my son sleeps like a rock. My daughter held my hand, put a bucket in front of me and said “throw up if you need to but it’s just your anxiety”. And I did. Throw up a few times, apologized of course,and she just sat there. In her pjs, holding my hand and started telling me a stories about some of the funny things that have been going on at school. I realized that her distraction was causing a chain reaction in my anxiety as I was listening to her instead of the pounding heart in my chest. I slowly came out of it, exhausted but grateful to have people close by who cared enough to help me get through it.

When you are alone & it happens, this can be extremely challenging. My shortness of breath plays tricks on me, believing my lungs are shutting down and I am going to smother . Again, my therapist said with an anxiety attack, you will breath much quicker in short breaths, which in turn actually increases your oxygen supply. Which is a good thing, but doesn’t help when you are certain you are going down for good.

He told me the worst ones last on average for 20 minutes and if I can get my mind to focus on something else it won’t last as long. If not, then an anxiety attack can’t kill you, so just let it do it’s best and know you are going to be alright soon. This isn’t particularily helpful when going through a full on anxiety attack. It’s overwhelming, terrifying and I feel like I am not going to pull through it. But since I always have, I guess he must be right. On days when one hits, it uses up every spoon* I have and then a few from the next day.

So what is the point of yet another article on anxiety ?  I write for therapeutic reasons for one, second is to let those of you who are crippled with some type of anxiety  know you are not alone, third to is to somehow change the stigma someone with anxiety is somehow “crazy| –  which of course if ridiculous, and fourth is to let you know takes a ton of courage to live with anxiety.

Anxiety, to me, is like that little troll under the bridge. You may cross the bridge 50 times and the troll stays where it is, but in the back of your mind it’s always there, waiting to creep up and attack you. Whether you stay in your comfy safe bed or go out into the world to maintain some kind of life. And I know I the troll won’t kill me, but he sure knows how to kick my ass. My goal for myself is to put that little shit under the bridge once and for all.
* THE SPOON THEORY by Christine Miserandino. She is the 1st

The other ‘stuff’

My experience has found people offer help but more often than not, find the idea of helping someone with depression or anxiety makes them very uncomfortable.  But when I tell them I have lung disease, also something you can’t “see” they want all the details.

I’m not suggesting anyone with mental health issues need unsolicited advice. It’s the lack of understanding. It’s the stigma still attached to any mental disorder that leaves me, at least, resistant to talk about … I’m embarrassed and ashamed of it.

No matter how often of my psychologist tries over and over to get me to accept the fact that mental illness is as real & debilitating as a physical illness, I’m still a work in progress. I mean, I get it … Just wish I didn’t have it.

But I am so done with the judgements and criticisms, which by the way makes me feel worse about myself. I am at a point where I can honestly say, sorry … didn’t ask for your advice & I don’t want it, thanks anyway !