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: chronicallyhopeful2014.wordpress.com
Image 2 : http://www.pinterest.com

The troll under the bridge

anxietydisorderprobs.tumbler.com

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.

 

http://www.pinterest.com
* THE SPOON THEORY by Christine Miserandino. She is the 1st

Have a “Crappy” Day

Well, I have decided to tackle the issue of pooping. Yes, poop. I said it. While my chronic illness affects lungs, the medicine I take to help control the inflammation really does a “number” on my gastrointestinal system. It has a serious impact on my day to day life, what I can do, where I can go. Imodium is one of my best friends. She comes with me everywhere. I have decided to name my next pet Imodium so I can say, do you mind if I bring Imodium with me ?

I do not have regular solid poops. I have had loose poops for many years now. Usually 5 or 6 per day. And that’s a good day. On the odd occasion the when the heavens open, shine down upon me & angels are singing, I have the odd regular poop. That event is celebrated in our house like a toddler pooping on the potty for the first time. I loudly announce it to my family, text my closest friends and a semi-party insues. I get a few TMI responses, but that’s ok. It IS something to be celebrated whether it’s personal or not. Again, one of the lovely side effects of having a chronic illness.

My inability to control how & when it comes can be frustrating and very embarrassing. I have said no to many invitations because this problem has cropped up and I just can’t leave the house. So do I honestly tell them the issue or use a little white lie ? Well, I lie of course ! I am too proud to tell someone I can go to your house for dinner tonight because I might poop my pants before I get there. Imodium works well but not always.

It has literally happened that I have not made it to the toilet in time. The emotional response to this is a strong one. What the hell is wrong with me ? How does my husband & kids even want to be near me ? I am so gross. I berate myself in such a way that I have crawled into bed and stayed there for days. I am beyond mortified with myself and beat myself up pretty badly when really, it’s not me. It’s a physical response to the heavy medication that my body has had to put up with for years. My therapist has finally convinced me I am none of those things and I tell myself to accept this like any other side effect. It’s still hard though.

Speaking of hard, I had a recent stay at the hospital, where due to the stress of the situation, I actually had a reprieve of my loose BM’s for FIVE days. I didn’t go once. I have to say, it was a nice change until I got home and decompressed. When I finally felt the urge, my God, I felt like I was in labour ! I was baffled by this change of events. How do people handle constipation ? It was so painful and exhausting. And this happened a few times until my loose ones came back. I really couldn’t tell you which is worse.

I know many people who can relate who have been diagnosed with irritable bowel syndrome (IBS). You don’t know when and how awful it’s going to be and it’s always in the back of your mind. Where is the closest toilet ? Who will I be with today ? Will they understand or think I am the rudest person in the world? But I will say, constipation is pretty damn bad too. The worry, will I ever poop again ? The bloating, the cramps, the pain of having a BM pass. The time it actually takes for the whole thing to occur only to realize nothing is happening. Either way, poop issues affect our quality of life.

I know this is not the most glamorous subject to write about, but let’s face it, chronic illness or not, we have all had pooping problems of a sort at some time in our life. I remember watching an Oprah episode that said the shape of our poop indicates our health. If that’s the case, I can be spontaneous, hurried, explosive, a fireball and hurtful at times.

So there is my scoop on poop. Please have a healthy poop today !

Image result for poop jokes ecards

Images from Pinterest

My Superhero Team

Just out of the hospital with my 43,000th stay (ok, I do tend to exaggerate from time to time), it gave me pause to notice something I hadn’t given much thought to in previous stays.

I have had pneumonia the past four years running. I do get my flu shot but of course as we all know this doesn’t cover all the ‘bugs’ flying around. Thelma & Louise try their best – my nickname for my lungs as they are still giving ‘er – but alas, January or February rolls around and because they are compromised, cannot hold up from the dreaded pneumonia.

Luckily, my bossy husband ignores the fact that I hate the hospital, never wanting to go no matter how bad my breathing gets. Because really, I know he’s right and something is up with the girls, more than likely I need some kind of intervention.

So with all the stars aligned, this time my pneumonia was caught early enough that I only had to stay three days. Last year it was a month. All in all, recovery at home is still hard but way so much better than the hospital.

I guess not focusing so much on a hospital stay allowed me to sit back and think about how people change when they realize you are ‘sick enough’ to require hospitalization.

My husband suddenly dawns a Superman suit under his regular clothing. Somehow he manages to spend time with me at the hospital, bringing me everything but the kitchen sink to keep me as comfortable as possible. Brings meals, stays to get updates from the doctor, dries my tears, jokes to lift my spirits. All the while putting in a few hours at work, taking care of our kids, managing the house, updating all who are checking to see how I am and reminds me every time how much he loves me, wants me at home but doesn’t want to risk my health further … I really don’t know how it does it, but he does. Maybe he really IS Superman ?  I  love this man the first time I laid my eyes on him, not realizing the true strength of all of his power. How could I ? He is Clark Kent during the day.

My daughter, Supergirl, who hasn’t quite managed to figure out how to make her bed yet, although in first year university, becomes the mom of the house. Making my husband and son pesto alfredo for dinner, checking in on me (ya, there’s a major flip cause I worry over her and her never ending social life), being home for her brother when Superman is busy saving his Lois, and clearly worrying if her mom is okay. She is lovely and bright and tells me how beautiful I am even though I haven’t showered for a week. She has a lot of invitations, but will stay with me, in bed and show me the funniest videos. I am blessed.

My son, who is the youngest in our little family,  but is now taller than me, becomes Spiderman. “Spiderman makes important choices where he understands where his responsibility lies … It is this acknowledgement that makes him a superhero.” When he visits me in the hospital, he updates my hospital board. He always leaves a kind message for the nursing staff (who to me, should be earning the doctors salaries). This time he wrote “thank you for taking care of my mom”. Yes, tears flowed over that one. He organized my table that held my kleenex, lip balm, phone & cord, etc. Got rid of all the empty little pill containers. His steady glaze as he delicately does each task trying to hide the concern behind his eyes, but he can’t fool his mom. He is sensitive and beautiful and is already a hero at his young age. Again, so blessed.

Then there are my siblings who I love incredibly as we have lost our parents and now are quasi- parents to each other.

My youngest brother, Tony Stark, who is most involved in my life and is as charming and as silly as anyone I have known, comes into to see me as soon as humanly possible. He cracks me up to the point where they have to raise my oxygen. When you are sick, the power of a good laugh doesn’t come near any pain med they can offer. And, he is Ironman !

My sister, Rogue, who is a few years older, texts me like crazy for updates until I am out of the hospital. Within a day or two we are in an arguement because she finds it very hard to see me becoming sicker. She tries to push me away and avoid the pain of having someone you love so, go through another hospital stay. We argue over something small but always seem to find a way back to each other. She will still fill my freezer with delicious home cooked meals, come from far away to visit for 1/2 hour & distracts me from my daily life. At the end of the day, I know she loves me and would do anything if she could take away my illness.

My oldest brother, Professor “X” is our wise sage. He keeps me from flying off the handle at silly things by very simple statements that keep the raging beast from surfacing. He does this in my daily life but it particularly adept during times of stress. He also reminds me of how much I am like our mother who suffered from chronic illness as well. Cue tears.

My extended family prays for me, sends loving messages and gives our family space while we get through this bout of additional sickness. My in-laws, Charlie’s Angels, support my husband and I in any they can, especially my mother in law. Last year during my long hospital stay, my mother in law flew back from Florida, leaving behind her husband and the warm weather to an ugly winter, to give aid to my husband, my family and myself. I am very lucky to have the caring in laws I have – and I am ever thankful for raising my Superman.

My closest friends, which I have three, are similar in that they know me and really get the challenge of living with a chronic illness. Always available with one text or call.

Wonder Woman is a police officer who has been my BFF since we were kids, so saying we have a few inside jokes is putting it mildly. During my long stay last year would visit in uniform to the ICU to make sure they knew I had some serious back up.  She is a single mom who does it all, but still has time to bring me coffee, tidy my kitchen, make me laugh until I pee and then off she goes to save the day.

Next of my BFF’s, Invisible Woman. We raised our kids together through some pretty crazy times. She came to my home yesterday to bring me up a Coke because I was too weak to do the stairs. She silently sits & listens while I ramble on, jumping from one topic to the next. She has a calm and relaxing nature about her that I don’t really notice until I find myself calm as well.

My third BFF, Jean Grey, suffers from a chronic illness of her own, so she takes her cues for what I need, not by request but by her own intuition that is always bang on. She is very generous of both her time and thoughtfulness and makes herself available even when her own illness crops up. She and I share our guilty pleasure, Y & R together over a glass of wine and are completely at ease with each others issues.

These women love me in a way only a girlfriend can and I know I can fully unload on any one of them and they will listen without judgement or advice. No price tag for that my friends.

Life is interesting to say the least when on top of a chronic illness, you suddenly become even sicker. It really doesn’t seem possible yet it happens.

This is where my superhero team comes into play even more than usual. I know I have many people who wish I wasn’t sick in general. And I appreciate their kind words of support. But to have the people I do in my life who are with my through the good, bad & ugly is something very different & wonderful.

I try not to feel guilty about all the little & big acts they do to help me (which what superheros do) and instead be grateful and appreciative because to be perfectly honest, I really don’t know what my life would be like without them.

And I am …. grateful for my team of superheros. Thank you !

Spiderman quote : http://theundercoverrecruiter.com

And now for something completely different

 

+

I was on twitter a few weeks ago and came across something that caught my eye. There was a post which headline read “20 Things I’ve Learned From Being Sick”. I thought to myself, how many of them do I have in common with this person ?  So I went to the blog and what I read hit me in a way I have trouble explaining. The article was very funny first off, but underneath the humour was so relatable and for me at least, seemed to switch something on the inside of me about my experience of being sick. In such a GOOD way.

I experienced some of the 20 but not all, however, the whole article is intelligent, funny and worth reading over and over. The author has lupus which I’ve heard from my own rheumatologist is a very painful & complicated disease.

It made me realize I was struggling so hard to impress others about being strong, inspirational, someone to look up to …. But just because I am sick doesn’t mean I have to be any of these things. I have had family members and friends tell me that I am. So … I doing a good job of being sick ? I don’t feel that way. Especially tough, are the critics who say I am not trying hard enough. I literally could kick them in the throat. Because sweetheart, you wouldn’t last a day in my slippers !

I have thought that to myself so many times and this author articulated sickness in a way I never could. Nonetheless, I am truly grateful for reading it. I feel entitled to feel how I feel no matter what people think or don’t think. My friends, it took me a long time to be able to laugh at being sick, but it felt SO DAMN GOOD.

The author has graciously agreed to let me quote her article & I would like to share with you a few points of this article that really hit home for me. If you want to read the entire article the source is at the bottom of this post, and I encourage you to read it, as well as the other posts. Sick or not.

“20 Things I’ve Learned from Being Sick

A few times a month I get e-mails from these awful websites that focus on inspirational nonsense and the editors tell me that they came across my blog and thought I would be a good fit for their site …  I just can’t submit something to websites that are 90% made up of articles with titles like “watch this inspiring paraplegic man play the drums! How inspiring! If he can drum then you can do anything!” No. If he can drum that doesn’t mean I can climb Mount Everest. There is zero correlation between those two things. I also have no interest in climbing Mount Everest so what is your article even proving, stupid website?!

So the folks asked for a “list-type” article detailing the inspiring things I have learned since being diagnosed with lupus.” And the request made me so irate that I actually sat down and came up with a list of actual real life things I have learned from being sick. So here is the list I created.

  • Stairs are the worst.
  • Beds are the best.

My bed is my best friend.

  • Netflix is also the best.

Okay, I have two best friends. Bed and Netflix. How did anyone get through having a chronic illness before Netflix was invented? I guess you just taped every episode of Days of Our Lives and re-watched it on your sick days.

  • My boyfriend (husband) is really patient.
  • I’ve learned who my true friends are.

Having a chronic illness is a great way to find out who your true friends are. I guess an even better way to find out who your true friends are would be to text and ask them. Definitely way less dramatic than getting lupus.

  • “But you don’t look sick” is the worst thing you can say to someone with an invisible illness.

It makes me want to hulk out every time I hear it. My friend Clare, who is really good at friendship, once said to me “You don’t look sick, but I bet that makes it even harder for you sometimes.” Yes! Be like Clare. Say things like that instead of ending the sentence on “but you don’t look sick.” If you say “but you don’t look sick” to me, this is how I hear it: “As a healthy person I feel the need to comment on your struggles even though it’s really none of my business and I must say that you do not look sick, which is my way of not validating your illness…….(cont’d)  If you’re telling me I don’t look sick because maybe my lipstick looks really fierce and I styled my hair a really cool way today just tell me my lipstick looks fierce and that I’m rocking my hairstyle! How I look has no relation to how I feel.

  • You have to joke around about your illness sometimes.

(Cont’d)  It’s important for me to have friends in my life who are also not serious people and who can joke around about it too. It makes coping with an illness way easier and it also makes it much easier to openly talk about your illness with those around you.

(And my favorite of all ….)

  • Everyone expects me to suddenly be inspirational and that’s total BULLSHIT.

I’m sorry, being sick or disabled just doesn’t make me or anyone else an inspiration. And if you keep thinking that, you are upholding and propelling very dangerous ableist beliefs that end up objectifying sick and disabled people and making them some sort of “other.” So quit it.

I am not an inspiration. I spend 90% of my time squandering my potential while binge watching Netflix originals. If someday I actually do make a difference in the world by winning the lottery and funding this breakthrough lupus treatment then give me a shout. But for now just let me watch Daredevil in peace.”

I think I love her !!! And she now has a follower for life. Thank you Lisa, you have no idea how you’ve empowered me.

I know this post is a long one, but I felt I had to do the article justice because everytime I read it it makes me laugh. And, it expresses so perfectly how I have felt so many times and just wasn’t bold enough to speak up. I hope this made you smile or laugh. I am off to get some fake eyelashes on … why, because I damn well feel like it !

Author of “20 Things I’ve Learned From Being Sick”  www.damselinadress.ca
Title” Monty Python, circa 1971″