Now you see it, now you don’t

It’s been a while since my last post. I have another inflammation in my lungs landing me the in the hospital (again), this time for a week. Doctors are still working on stabilizing my lungs. I do enjoy challenging people but I really believed they would have found a treatment by now. But the specialists are still working on it, so kudos to them for not giving up on me. And I hope they do find one and soon. I am not too exited over the idea of a double lung transplant. But, like anyone with a chronic illness, patience is key. Hope is scary. And the unknown causes anxiety. We each deal with this in our own way and writing is a good outlet for me.

So, the reason for this post.. Out of hospital I was prescribed oxygen (O2) at home for exertion. One part of this is a machine that is plugged into our electiricty with a 50 ft tube so I can literally go anywhere in my house. So if I am climbing our stairs, cooking, walking on the treadmill, etc. I can use the oxygen that helps to both save energy and reduce my shortness of breath.  I also now have access to portable O2 tank, which comes in a heavy ass shoulder bag, for when I go out. We are hitting my worst season, summer. Anyone with a respiratory condition I am sure can relate, so without a doubt the portable tank will get a lot of use.

I can go for walks outside when the weather agrees, go to the mall, out for dinner, visits with friends. It has made a huge impact on my ability to go places and see people,  that without the oxygen, I could not. I still get bad days however, which can be discouraging, because once you have a small taste of what able bodied people can enjoy everyday without thinking twice about it, it really is addictive. My therapist is thrilled at how much I have done to date. I was stuck in my bed or at the very least, in my house for a majority of the time. I am sure I don’t have to explain the emotional toll that takes on a person. It’s hard.

With this new found freedom, my illness has changed from being “invisible” to “visible”. It almost reminds me of those programs that do social experiments on unsuspecting people to see how they would react to seeing someone bullied, drop a $100 bill, slack off at a coffee shop or what have you. For me, before the O2 tube, no stranger would know how truly sick I am. I am on predisone, so that has a certain look to it. But you wouldn’t automatically guess that I am taking that medication to help control my lung inflammation. So my chronic illness was truly invisible.

Before the tube, people would be very impatient at how slow I walked. Many times I would get loud sighs, as in, can you move a little quicker here, I haven’t got all day. People would bud in front me, seeing me heading to a register and quicken their pace to get ahead of me. Something my lungs don’t allow me to do is walk quickly. I have gotten many surprised looks about being on disability. A look that seems to me is “nice, someone else taking advantage of the system”. Some of this may be me being sensitive to peoples perceptions but I really don’t think I am too off the mark.

Now that I am wearing the O2 tube, while outside the house, there has been a noticeable shift at how people look and talk to me. I was very self-conscious at the beginning, feeling as though everyone was looking at me. I would study their face as they passed me just to see if they did look and if they stared. And man, do they ever ! Doesn’t matter if it is a man, woman, their age, their own condition. I had a 10 year old boy stop on his bike and ask me “what is that thing on your face?” If he was closer to me I probably would have kicked him off his bike! I would be humiliated if either of my kids talked like that to a stranger, much less in such a rude way. And while out shopping in a clothing store, which takes a lot of breathing power actually, I came out of a waiting room with the tube on and a an older woman, sitting on a walker no less, said to me “poor you”. I again was shocked that first of all she wouldn’t get that people of all ages are affected by illness and secondly to comment there is something to pity. Again I was insulted. In my mind I thought if you knew how this appartus has changed my life you would be saying “lucky me”.

I have had this invisible vs visible illness discussion with a number of people who are close to me, for their thoughts on people’s intentions when they stare or make comments. My husband thinks no one notices. Which I always find amusing. He is constantly trying to minimize my self-critism, which I was very hard on myself adjusting to the tube in public. My daughter, studying to become a nurse, gives an evil eye back to those who stare and has the opinion, why would people not ‘get’ that a person would feel self conscious already wearing a tube & that staring at them makes them feel uncomfortable ? My son’s opinion is, if it makes you feel better, who cares what other people do or think ? Finally, my friends believe people are not trying to be hurtful, they are just curious about someone so young needing oxygen. And saying something like “poor you” is just a person trying to be nice.

After many years of being sick, I have come across a lot more people who judge and criticise then those who are kind and supportive. I keep very close to me the latter, and lucky for me I have quite a few in my life. I am not sure  between the two, having my illness hidden or out there for all to see, which is better. I know what makes me feel physically better is having my O2 tank.

To be honest, I have stopped looking into people’s faces for reaction, approval, ignorance because at the end of the day, I am getting out there. I am feeling productive. And that makes me happy. To be able to go shopping with my kids, pick up a few groceries,dinner with my husband, get my hair done …. this is all good stuff. Given the choice, I obviously want to enjoy some “normal” quality of life, regardles of what anyone thinks about how I look. And quite frankly, if it makes them uncomfortable that’s their issue not mine.

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My Loyal Shadow

I have been wanting to write about this subject for quite some time, but every now and again, the subject matter means so much to you it seems overwhelming to do it justice. I have a chronic illness & my closest companion is my dog, Daisy. A close member of my family suddenly lost their dog yesterday so I decided to write about Daisy while my heart is filled with love and not with loss.

I have lived with a dog most of my life. While quite young, my family had a very protective German Shepherd who was sweet to us but would rip the pants right off the oil man when he came to fill the tank. When she grew old and sick, my mom and older brother took her to the vet to be put down. My brother has been and is a stoic person. My mother said it was the first time she had seen him cry. We all loved that dog and my brothers’ expression of sadness was a dedication of what a great dog we had growing up.

Next, while I was a late a teen, our family had a Beagle, who loved to chew my text books and eye glasses, even when left high on a table. My mom would ask me, why do you leave things where he can get at them? As I gawked at her in disbelief, a part of me was still impressed this pot bellied stubborn dog would do anything just because he could. He was treasured by my younger brother and I will admit, even though the dog cost me a mint to replace university books, I had a soft spot for him.

When I moved out, I was never quite settled long enough to commit to a dog relationship. I believe once you make a commitment to an animal, they are yours for life. However long that may be. When my husband and I weren’t quite ready for children, I begged him for a dog. We were living in an apartment, so not the best of circumstances, but with love and a good home, dogs adjust. We bought the dog from a pet store, after I had visited the store and fell in love. She was a hound dog and beautiful. Being a first time owner, I made all the classic mistakes. Treated her like a baby (we even had a toy bag we would bring for her everywhere we went). And she did go with us everywhere. She also spent a lot of time alone as my husband and I worked full time. She would destroy things from boredom and attention. She actually managed to rip apart our loveseat right down to the springs.

Eventually, I became pregnant with my first child. We moved to a townhouse and our hound had a lot more room. Unfortunately, our actual baby took her spot in the “pack” and she was not happy about it. Our well trained dog, peed and pooped all over the carpet where our baby played. She would growl if our daughter came near her. Was terrible to walk, or should I say she took me for a drag ! But we made the commitment so we put up with her antics hoping she would grow out of it as our daughter became older.

Then I became pregnant with our second child. At this point I was a stay at home mom and with a two year girl and a baby on the way, had little time or energy to devote to our hound. She acted out even more. Tearing up dirty diapers and smearing them across the carpet. Lunging at anyone coming in our door. She escaped once and nearly ripped into a man crossing the street. We found out around this time we were having a boy. My daughter was very mild and gentle but I heard that boys were much more energetic, curious and hands on. We decided at that point it was time to re-home our hound. It was and still is one of the most heartbreaking decisions I have had to make. I loved her but had become afraid of her. I knew we were not meeting her needs plus I had serious concerns about the dog around my daughter and my son.

My husband found a friend from work who lived in the country who was willing to take her and bring her into his family. He had a large property, his children were older and it seemed like a good fit. I was seven months pregnant when I said good bye to her. I wasn’t strong enough to go with my husband to her new home. Which was selfish. And I have never seen or heard about her again as my husband switched jobs. A number of years went by and although I still felt an absence in my life without a dog, I felt after giving away our hound I didn’t deserve a dog. I had done the one thing I promised myself I would never do. I still feel the heart ache for our hound and wonder if she had a good life.

I did want my children to grow up knowing what it is like to have a dog in their life. And I missed the companionship. So behind my husband’s back I secretly started searching for a dog that needed rescuing. After many months, the local Humane Society had an ad for collie/retriever pups. My best friend and I went to check them out. When we got there, only two pups were left – a male and a female. So they put me in the room with both dogs and I felt drawn to the male dog. As I sat on the floor he ran over and bite my mouth. And puppy teeth are damn sharp ! The female came to me, crawled on my lap and almost immediately feel asleep. Her name was Dottie. And she picked me. We had to go through some formalities and I made many promises to my husband but the four of us brought her home that night. My son was still quite young and kept calling her Daisy. And that name seemed to suit her better.

I did follow through on my promises. I took her to puppy kindergarden. She was taught how to eat while the kids touched her bowl and her food. Because I was her main trainer and spent the most time with her, she became “my” dog. As she grew she resembled a border collie and had many traits of that breed. She loves to fetch, loves to swim, loves the kids, even likes our cats. She had her puppy destructive period, but hey, we needed a new floor in our hallway anyways.

As she grew and matured she has become a lovely dog. I learned from my earlier mistakes and am proud of the part I played to help her become a truly wonderful pet. She had it in her all the time, it just took proper training for her to learn. And she is smart !

Cue my chronic illness. Because my illness is in my lungs I became unable to walk her. I had trouble getting in and out of bed so the walks which helped to manage her energy slowly came to a stop. I was worried that at this point she might start acting out. My husband, daughter & best friend all attempted to walk her but she would struggle off the leash and head straight to our front door and bark until I let her in. At first I thought she just wasn’t used to being walked my anyone but me. I soon realized it was much more than that. As I struggled to do anything in the house, she was my shadow. Watching me, comforting me, even urging me to keep trying. When I could do no more, I rested on the couch and she lay on the floor right in front of me. Only moving when I did.

When we began to see doctors to find out what was going on, I became very anxious. I was scared and because they knew the cause of my illness but not how to treat it, the uncertainty was frightening to say the least. My kids were 10 & 7 when this began. I was worried for them and my husband. But Daisy would stay by my side, put her head on my legs as I cried, laid beside me as I slept – which was and still is a lot. The doctors put me on prednisone & oxygen so I was stuck with a tube in my nose everywhere I went & thanks to the meds,  the mood swings were anywhere from OCD, to depression, to anxiety … Not too many good ones. Daisy managed to side step the tube as she followed me. Sensed anxiety so would sit near but make no demands from me. I never had to ask for anything from her, she seemed to know what I needed from instinct.

As the years have gone by, Daisy has been a constant comfort to me. Not able to work any longer, she is my company during the day. She lies with me and never gets out of bed until I do. She is extraordinarily protective and sounds like Cujo if we are alone and someone rings the door bell. Even as I am writing this, she is lying beside me, patiently letting me type my heart away without a peep. I can’t imagine my life without her. She is so much more than a pet. And I deeply love her, bad breath and all. I hope I have added to her life as she has added to mine, but I don’t think that’s possible. I understand that not everyone is a dog person, or even an animal person but everyone knows a true & loyal friend is very hard to come by. Well, this is what Daisy is to me. The most loyal, loving, true friend I have ever had. I am thankful for everyday we have together. She is my best friend.
This post is dedicated to Cosmo who will be greatly missed by his “pack”.

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 !

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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

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 !

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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 :

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”
Title” Monty Python, circa 1971″

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 !

Get Your Groove On !

My psychologist has been working with me to try and help me deal with my phobic anxieties. One that has been difficult has been my anxiety of showers. I know there is a complicated issue behind it, but having the “why” just feeds the anxiety.

So to encourage myself to shower everyday & get past this, I created a playlist of very upbeat tunes and find myself lost in the music, not in my fear. To try to enjoy the experience rather than be fearful of it.  And crazy enough, it’s working !

“Different music genres can make or break your mood, we all know this. Music is important for regulating our emotional state, can impact our focus and has an effect on the overall way we feel. Music has been used for centuries to change energy levels, improve mood and even to help people who are ill or suffering from emotional trauma to heal.”

“According to research published in The Journal of Positive Psychology, people can successfully improve their moods and boost their overall happiness in just two weeks, simply by listening to specific mood-boosting music. Researchers from McGill University … the response to music comes from the chemical dopamine. Correlating increased levels of dopamine in the brain to corresponding music proves that humans obtain pleasure from listening to music… find the types of music genres that get you feeling great … Now go get your groove on!”

Quote :
Image :

“Hello, It’s me”

I read this today on and it really hit home for me. I don’t know this will resonate with you, if you similar people in your life. I get a lot of unsolicited advice that some I keep & others I disregard. But there are a number of people I find it extremely hard not to speak up to, and the odd time that I do, the response is very negative. Sometimes I don’t hear from them for months. I found this post today so familiar I have to share.

“…there is an African saying that warns, “Be careful when a naked person offers you a shirt.”

The saying
 is essentially warning us not to accept people trying to give us what they do not have for themselves. More specifically, it might be telling us not to accept love from people who clearly do not love themselves.

On the list of toxic people with a questionable ability to love and could be present in your life, the “naked” are likely the retrogressive among us. A retrogressive person tends to distort your progress and tries to manipulate you backwards or keep you stagnant, wanting you to continue to be the same person you are.

Life is easier for some people if those around them don’t change and grow. It means they don’t have to do the same… they don’t have to grow either. And some times, some people really need to always feel that they are higher than you and their sense of purpose comes when they believe they have all of your answers.

What’s difficult is the retrogressive is usually someone who does have influence on you, someone you do believe cares for you and it’s not necessarily that this person knows decidedly that they are holding you back. The person may present as very well-intentioned and you may both genuinely believe so, but in the end the retrogressive usually needs reminding that choices in your life are yours to make.

Being able to speak your mind, your heart and your truth and knowing you won’t be judged but will instead receive emotional support is the basis of trust. And trust is what we rely on most in a relationship that is loving. Trusted advice comes about when someone has had a common experience as you and when asked, will share with you in an emotional way what worked for them and what didn’t. But advice that is not asked for and includes “you should” statements is generally unsolicited and a sure way to slow conversation down to a trickle. It also risks driving people away.”

It’s better to live your own life imperfectly than to imitate someone else’s perfectly. -Elizabeth Gilbert

She continues a little further …

“My relationship pattern has usually been to think I must be wrong, or that my feelings don’t matter, or to give excuses (and forgiveness) to the person for their bad behaviour without expressing my hurt or to simply avoid the conflict of confrontation and try to believe things will be better moving forward.

The reality is I’ve taught people how to treat me and I’ve been learning it’s a hard, and often lonely, road to take to change these patterns.”

Title – Adele

Quote –