Beauty

I was reminded the other night about “beauty” being only skin deep. Yes, it is true. I was attending a meeting with other ladies and one of them read us a short devotional if you will. The topic was “beauty” and discussed what we all know: that:  being  that beauty is considered in that which gives us pleasure or is pleasing. That got me to thinking about it.

As a society, we value beauty, not just in our bodies/faces but also in our surroundings. You mention the word beauty or beautiful to anyone and they will picture something or someone different from you. Ahhh, yes, beauty is in the eye of the beholder, right? There is such variance as I think of that tribe in Africa that sees beauty in a long neck: girls start to wear these metal neck rings to ensure their necks are elongated, the Japanese at one point thought/valued small feet and women would bind their feet and became deformed, some think piercings and tattoos are beautiful, others like make up, hair dyes, etc. We certainly know that people are willing to spend their hard earned money on cosmetics, plastic surgeries, botox, body building, tanning and the list goes on. How can you not when you are continually bombarded with images and messages, some outright and others sublime. That just considered the people, there is a whole other realm of beauty to be had in our homes, in our gardens/yards, communities, cities and the world over. Don’t get me wrong I like pleasing things just as much as the next guy, I just get the idea that beauty is only skin deep meaning that beauty is something more than superficiality.

For instance, take the blind or visually impaired: how do they describe or experience beauty? Obviously, it is not something they can see, but rather something else they must sense: I would think their sense of beauty would lie in sounds, smells and touch/taste. We talk about our “mind’s eye”, which I think is what we picture in our minds, but how can this be for someone whom has never seen anything?? What do they picture?

There are so many interpretations or views of what is beauty: Take a look at these photos. These are considered beautiful images of women, which is truly beautiful?

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As I go through life, I realize superficial beauty is a wonderful thing if you have it, but if you don’t (according to society, or even your friends) it doesn’t mean you don’t embody beauty. When I look at photos or images of people, I gravitate towards the eyes and the laugh/smile. Why? Because they usually can’t lie. I think beauty is something we also carry inside and is shown to the world by our eyes, our smiles, our laughter our hearts and souls (our actions or words).  Maybe we have a wart on the end of our nose, maybe we have bad acne, maybe we have scars or burns. We have beauty inside which can emminate outwards. As women, we have many roles, many important parts to play individually, as a spouse/partner, as a mother, sister, friend, etc, and the list goes on. Society would lead us to believe our worth is in something so superficial that the least blemish will send teens and perhaps younger now into a panic!! Lord help them when they are faced with something that is potentially scarring: whether to her external beauty or to her internal psyche. The latter of course being much more damming. For me, with my journey of aging, and this on-going battle with skin cancers, I have had to let go of the societal image of beauty and be a better beautiful person. Every day is a new day and I am thankful to have the health I do and am still able to enjoy much of life.

My world through the lense:

Looking the lens of my camera makes my work manageable and beautiful if I chose or I can make a statement of impact. Photography is a wonderful hobby and potential cash maker, if you work hard enough, practice long enough and in the correct way, using your equipment correctly and actually read the manual(s)!! But, grabbing the camera for a morning or even a hour and just get away from the every day has such worth for me in terms of fun, socialization, meeting new people, connecting with life minds, learning and growing together.

There is such a feeling of calmness, possibilities, and excitement at what may be and the push to do something different! Just get out and shoot. Have a goal: my present goal is to continue working with my equipment and become more comfortable if off camera flash and actually DO fill flash. I have done several natural light photos which I do prefer that “earthy” soft light. I dream of being able to take those photographs that make you stop and think , “wow, that is  such a great capture, so creative”!! It makes me slow down and breath, enjoy what I am photographing and have some fun.

This hobbies which has led me to meet many fantastic people with varied talents and knowledge which is a real blessing.

Chronic kidney disease (CKD) is a pain in the assets, if you know what I mean. All the scheduled appointments, labs, scans, Drs, RNs, RDs, and list seems to go on a bit too long! I recently found a new GP accepting new patients so was on the phone PDQ to get a “meet & greet”. Of course, being a RN, I went prepared with all my medications listed with doses and frequencies as well as a list of all my specialist Drs that I see for x, y, & z. Za, & others PRN. ? Of course, first question was, “do you take any medication?”

Me: I sure do and here is the list along with all my Drs/specialist ( it was a full page typed out on WORD doc.  It would not be complete with out family history and present medical history…At the end of the visit I had to know, :So, you game to take me on??”. I’m still there, so its all good.

You’re probably thing this has nothing to do with photography, well , yes, it does. Let me explain. My usual life is taken up with varying degrees of reality, keeping myself on track with many different aspects ( of course keeping in mind all the dos’& don’ts, etc. and then at work I do exactly the same for the many people I see for their chronic disease management. I’ve often thought that their lives, their stories/experiences could be so well documented with out a word by photos rather. Similar to the “People of New York” that is popular, we could make our own Photobook: the People Close to Our Hearts and Souls.

Of course, photography is not ever considered during health matters as this usually is because the person has hit a rough patch in life and has lost hope, become depressed or overwhelmed, burned out, etc. I think that seeing the “reality” of people where they are makes them better understood and lets us as clinics have a brief glimpse into their lives which we are trying to help with and change. We all know change is always a tough thing because very often we have to look at OURSELVES and see if there is something that we can be doing differently. Do we/I know about my patients: their lifes, jobs? children, sandwich generation? poverty, poor reading/writing, where they live, etc??

Photography is so powerful in showing emotions, every day activities, general community activity and the people that life there.

 

 

Watching the Wheels…

Watching the wheels churn, which applies figuratively to many things in life. There is the daily grind, the wheel of health, the wheel of public policy, and so on. For those of us with chronic diseases, we have our own “wheel” and this is imbedded in the health care system. Due to the fact that many  diseases need constant monitoring can make you feel like your forever seeing Drs, RNs, dieticians, more Drs and having more and more tests. When you have CKD like myself, there are so many things they want to keep track of: creatinine levels, blood counts/anemia, bone health, Magnesium, calcium levels, phosphates, albumin in blood and urine, plus the numerous special testing they need to do to judge your antibody levels in the transplant work up just to name a few. Then, if you’re real lucky, you will have other diseases that compound this process which necessitates more medications, adjustments, more testing, more treatments which then spits you into a new regime of follow up. It just seem endless!

I remember looking at my calendar one month and I think EVERY day off I had from work I was seeing different Drs, having blood work, or having a treatment in hospital. No wonder I was ready to jump off that wheel of wonderful and have a little “down time”. Crazy! It also made me think of my Dad: he was a minister in the United Church. As a kid, I remember one day walking by and looking at his appointment book. I don’t remember any empty spaces in it for an entire month!! It makes me think of how we just trundle along, doing what we do, not really thinking about the big picture. For me, during the rough patches, I would have to just go one day at a time for to look beyond that, was just too overwhelming. You start to micro-manage and compartmentalize your life.

I just watched a movie trailer called “The Abundance Factor”. The movie brought to light many truths about the lives we chose and what power really do have. The main theme appeared to be that life is what you make it, starting with what you say to yourself every day! So its all in your head!! I’ve always said that attitude is the thing in life that will either serve you well or not. The movie also pointed out that maybe the “norm” is not for you (they talked about the societal belief that you went to school, got high marks so you could get a good job, make good money, etc, etc) and that maybe your happiness doesn’t lie in working yourself and stressing about things that don’t make you happy. This of course doesn’t mean you should caution to the wind and abandon reasonable choices. Living with CKD (as others with other diseases) forces you to come to terms with what you really want out of your life: what is important to you. Some of us still take a while to see this…I was that generation that had it pounded into them that success and happiness are linked. Happiness and success was about achieving status, financial security (actually more than that: it wasn’t enough to be secure, but be very comfortable). Yes, it is important to have some of these means to ensure health, but as I progress in age, diseases, and hopefully wisdom, these things are not so important. That wheel of happiness is not all its cracked up to be. I’ve missed out on sleep, time with family and friends, being able to pursue hobbies like I would like, and develop more of ME.

Being in the CKD wheel also makes you want to stop the madness even if its just for a week. How fantastic it would be to go through a day with NO PILLS to take, no needle pokes, to get a full night’s sleep without stressing that you’re getting enough sleep so you will be on your game the next day at work. Extend that out to a week or even better, a month!!! What a holiday that would be. Recently, there was a change in the amount of protein that I leak through the kidneys so I had to change one of my medication doses (increase) and with that was the request to repeat my labs in a week…Yeah, that didn’t happen. First of all, “repeating my labs” means 3 tubes of blood and urine again for the umpteenth time…for what?? It is a waste of my blood, time, and the dollars  in healthcare to process all the other blood work on there that doesn’t need to be repeated. If they are concerned that I might lose too much potassium, well, I know what that feels like so would just eat a banana or orange or two. No this isn’t optimal and certainly NOT what I would advise a patient, but this is me. I will do the labs, but not for a couple more weeks when I go back to see nephrology in follow up. I just get tired of having to schedule my time and life around lab appointments, work, fun, Dr visits, etc.  I just want to be normal and live the good life!

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Faith, Hope, and Questions

Have faith they say, have hope, never give up they say… Humans can only handle so much until they break, or at least crumble a little. I was brought up in a Christian home, my mother being the “glue” that held the family together. Then, one day my father decided, ” I’m going to go back to University and be a minister”! What? You go from globe trotting with the RCAF, to Saskatchewan, to settle into theological studies, while we have to move a very small town (hamlet?) from Edmonton. So, we as a family, had faith: faith that he would successfully complete his studies while ministering to a small rural congregation, Of course, looking back, I don’t know whether faith had much to do with it on my part, or my siblings, as we were along for the ride so to speak. I think I was going into grade 4.

So, not only are we moving from a large city to a very small “speck of dust” on the prairies, but I was now going to be a “preacher’s kid”. Double whammy! With this new role, I was expected to “tow the line” and be a good girl. There were no questions about whether you were going to church on Sundays, because you were. I remember when I was about 10 years old and wanted to take a stand: I said I was NOT going to church! To my surprise, my father and mother didn’t object, they just got themselves together and off they went. I think they knew that I would arrive at the church, just in time for the service to start and to see my father looking at me with a big grin! He knew what was embedded in my heart: it just felt so wrong not to be there with my family: so much for rebellion.

So it goes, I was always the “good girl”, never made trouble, studied hard all the time, got ticked off in grade 6 when my group mates didn’t hold up their end of the project (remember I am type A personality with a touch of OCD: my teacher actually spoke to my mother to ask if I had hobbies meaning I was too intense? for grade 6? not sure), and of course, the basics of Christianity were firmly planted by this time.

Being a Christian has expectations attached to it, just as my father gave me the will to chose to come to church or not, Christian foundations also influence your choices. So, being diagnosed with CKD is a major adjustment and needs some faith and hope to get through some of these days. This doesn’t mean I didn’t question, because I have. The classic question of “Why me?” becomes, “Why not me?”. It’s a hard pill to swallow and you question what kind of God just lets these things happen (especially to me, after all I was a good girl my whole life). You’re told there is a grand plan and that we may not even know what it is! There is an element of hopelessness about that, basically admitting you are powerless over your life and God is in the driver’s seat. Being human, being an A personality, that causes conflict. The frustrating part is that you never really get answers, in the end you try to get some peace out of your situations and perhaps use what you go through to be of benefit to others. I must say, that becomes more difficult as the complications keep rolling in: long term steroid use has made me diabetic now, this same medication has given me “bacterial overgrowth” in the bowels, as well as having osteoporosis due to the CKD making me dependant on medications that are given via IV every few months. Then to top it all off, during investigating the constant bowels problems, I am the lucky genetic winner with getting another diagnosis of hemochromatosis! Normally, this isn’t such a bad thing because the treatment is basically donating blood every so often to bring your ferritin levels down in your blood. Me? I’m not so straight forward: having CKD, means chronic anemia, which means they can’t just take a pint and call it a day. I have to do chelation every night or risk getting liver damage/failure. Well, isn’t that he icing on the cake!

When I was presented with this new diagnosis, and the treatment of choice:  which is iron chelation, it was a brand new world. The three specialists that I see regularly to monitor all this are a hematologist, my nephrologist, and now an internist that deals with liver disease. The kicker is that we are running this with no “data” to back up, as this is normally not to be given to anyone with poor kidney function and has never been done. The main problem being the fact that the “cure” for the hemochromatosis was a treatment that could potentially put me into overt renal failure! Let me tell you, I agonized and questioned and prayed and had a couple melt downs. I did the nursing thing and researched it all: wrong move, because that just made me more afraid and worried. In the end, it was a question of having faith and just doing it! I did not have faith for several months while I pondered this. Then one of my Dr’s put it in another way: either I go into liver failure and kidney failure, or we treat the hemochromatosis and hopefully save the liver. I did pray that this was the right thing and that it was now in His hands, let the chips fall.

Doubt: absolutely! Blind faith, I’m afraid not. I hope, I pray, and I try to keep going and be that “good girl”. It’s tough just handing things over to God and actually letting go. The times I have done it, there has always been a sense of peace that comes over me like a blanket. It is said that the Lord doesn’t give us anymore than we can handle, but does he need to push it to the limit?? Even when you try to make peace with it all, there remains nagging doubt deep down: that thought that what if nothing of this really matters? This question then takes me back to the ol’ philosophical existence question: “Why am I here?” What is my place in this world? Am I doing any good? Some days these questions are more pressing than others which fosters a need to delve into life, it’s meaning, and all that good stuff.

I guess in the end, it is the daily or hourly choices we make that hopefully provide us with some peace, some dignity, and some quality of life.  More and more, as I get older and deal with these forks in the road, the trials, the tribulations, it is my spirituality that I seek to give me comfort. However, there are times when I need to feel the human touch and a warm body to cling to.

 

couple hugging

 

Life is for living.

Life is for the living. Absolutely. I don’t know about others, but I know when I was told I had chronic kidney disease I thought I could manage with the help of the Drs and by following all “the rules”.  In the early period, I was in hospital for about 2 1/2 months. I remember being very weak, very edematous, had lost muscle mass because of the amount of protein I had lost through the kidneys. I remember having to take a large dose of prednisone because that was the treatment for gross proteinuria. In case you are not aware, prednisone is a catabolic steroid, which means it “breaks down” things in your body. You are also left with the ol’ “moon face” look which is not too becoming: think puffy face, abdomen that looks pregnant, arms that look like sticks, and legs that are so swollen walking is a real effort and your feet are painful. There is so much fluid in your body that you can’t even finish a sentence without being short of breath.

I had gone from a healthy, young new mom and capable RN used to caring for others (helping them out of bed, helping them off the toilet, helping them wash and dress) to being one of them. “Them” meaning those that needed care and help, those too weak or too sick to manage on their own. How wrong did that feel?? This was the first time I thought I might die. I remember laying in my hospital bed at night with tears rolling down my face and talking to God. I told him that if this was my time to die, I wasn’t too impressed given the fact that I have a little girl to raise. That little bundle of joy that I had waited and longed for, may not be mine to raise. “If this is your will, you suck!” Yup, I said it: in the dark, alone, scared and struggling to breath.

All of this transpired over a short three weeks. I remember thinking: ” damn it! I made it through an entire pregnancy with no stretch marks!” Now, in three weeks, I had gained enough fluid to necessitate the wearing of maternity clothes again. I guess that was a bit of a blessing, because when I went out, people just automatically thought I was pregnant and would smile at me…little did they know I was in a battle. When I went home, I was determined to look after myself and my new baby girl! Even though it would take me at least half an hour to shower and get dressed, I was determined to do it. I had to sit in the shower, and washing my hair was a real effort and I easily tired and was short of breath. I had to lay on the bathroom floor for a while after the shower to recoup before dressing. Quite the change for something we take for granted and it being such a basic need. But it did give me insight into how my patients feel when they are totally vulnerable while I assist them to get showed/bathed and dressed.

Ah but for the love of family and friends! When my feet were so swollen that I couldn’t wear any of my shoes, a friend and fellow RN brought me these wonderful knit slippers which a remember with fondness, appreciation and love. My mom travelled to my home to help care for my daughter, as she was one year and I was still too weak to pick her up.

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You just can’t get through something like this without the support and love of friends and family. It is with their caring and love that I am able to have a somewhat “normal” life and have the privilege of living life to the best of my abilities. I have been fortunate to stay in shape, eat the right foods (for the most part…), manage my job, family, social life, and even travel to many wonderful places on this planet. But, trying to live life to the fullest takes its toll. Above all, we have to remember that this chronic disease we are battling, is also a battle that our friends and family share with us. They are affected as well. As the saying and song goes: No man is an island.

No matter how good or bad you think your life is, wake up and be thankful for life: Someone somewhere is fighting to survive.”

 

 

 

Living the Life!

” Strength does not come from winning. Your struggles develop your strengths.  When you go through hardships and decide not to surrender, this is strength.” Arnold Schwarzenegger

Strength, hardships, decisions leading to surrendering  or living the life??

I have started this blog with the intent of working through some grief (just found out this from a session with a counsellor) which stems from me trying to “live the life” of a normal person, when clearly, I am not really normal. No, I’m not some lunatic…I am a mother, a registered nurse, a daughter,a wife,  a friend, a sibling, and I live with chronic kidney disease among other chronic health problems. While I try to live a normal life, it has become increasingly difficult and wearing. This blog will be my experiences, thoughts, feelings and adventures in this crazy world! Come along for the journey if you have the courage.