Saturday, March 31, 2018

Life as Music and Comfort During Grief, The Death of My Aunt, Pancreatic Cancer, Wishes for My Cousin, and Kacey Musgraves' "The Golden Hour."

I wasn't there, but with her last breath, my aunt was surrounded by family and the sound of the music she loved, as she died. Her daughter, my cousin, was unusually close to her mom. Similar to my daughter and I. They were Lorelie and Rory. Best friends and Mother/ Daughter. After fourteen long months of a roller coaster of emotion that the brutal beast of Pancreatic Cancer brought swiftly (after additional years of suffering,) my cousin watched her mother listen to her last song.
 (My aunt is the on the far left)
My aunt and my mother.
"Bursting with empathy, I'm feeling everything, the weight of the world on my shoulders. Hope my tears don't freak you out, they're just kind of coming out. It's the music in me and all the colours... I'm just sitting here and thinking that time is slipping and missing my mother...mother..."- Kacey Musgraves (*1) A daughter is missing her mother dearly and I can not begin to imagine the distress in my cousin's soul.
(My aunt is in front of the red candle watching my grandparents kiss. Each person in the photo besides my grandparents themselves have passed on. I can't even imagine the weight they have had to bear during this battle of their youngest daughter's after losing siblings, friends and other dear loved ones. Losing a child at any age is the deepest of sorrows.)

My aunt introduced me to some of the loves of my life; Eighties Rock, Country Music, Rom Coms, Elvis Presley, Audrey Hepburn, Barbies, and Keren Carpenter. We shared our tastes, magazines, and loved to explain to each other the back stories of songs written, bands who were famous, and their life stories. Pre Internet, this was a challenge and full of fun to find resources to back up our claims and prove our points about musicians, bands and life. The day after her death (today) I discovered Kacey Musgraves new album, "The Golden Hour." I realized that I could not share it with my aunt, who liked Kacey and Country tunes, but I somehow found comfort in the music despite this fact. Kacey wrote on the back of her Digital Booklet; "There are certain conjunctures that you can't think your way through. You just have to feel. I found myself at one making this album. It was like the universe was majestically saying "this is a time to be present, to witness the beauty of this incredible world you are lucky enough to be alive in" despite it being more complicated than ever and filled with so much darkness. We all need a little light right now. We all need compassion and art to flourish. We need to remember that when moving forward feels impossible, somehow new love still finds its way up through the cracks in the sidewalk. The sun still rises and the birds still sing. Inspiration finds it's way to you again..." I found this sentiment to be exactly what I needed.

Auntie Donna taught me how to put on my first bits of make up. I was about six, sitting on her bathroom counter watching her apply her foundation. I watched fascinated and wistfully proclaimed, "I wish I could be as pretty as you. I wish I could wear that too." She smiled and said, "Oh honey, with your olive skin tone, you are lucky to have that fresh childhood glow. You will have your turn for cosmetics, believe me." I think I looked a little crestfallen because she laughed and added, "But you know what? Make up can be a lot of fun. It's part of the beauty of being a girl. Some things are not so fun, so why not put on your morning face. Let's put on a little bit of eye shadow and lipstick." I looked in her oval mirror after her gentle application, and I felt gorgeous. My side ponytail and overalls didn't diminish my perceived glamorous affect. Anytime my aunt slept over, in the morning she would exclaim, "Let me put on my face before I come out." I loved that phrase.

Auntie Donna helped me find my voice in music as my main language. Music is medicine, empathy...and friendship. Before Christmas my Aunt came out to visit and brought two huge bins of her old records for me. She proudly told my husband, "Kiss always appreciated this type of thing. Missy has loved the music like I do. She knows that it can change life. I wanted her to have these pieces of me that we shared." We put on a few records while we talked. I found it hard in some ways because the Aunt that I related to in my youth was different from the Aunt who had gentled and was a smaller version of her old self. Watching her waste away in body and slowly in spirit was terrible. But I didn't wish for her to know I was thinking upon that. Because she was giving the fight of her life and still living every second she could. I wanted to respect that and give it dignity and not allow my own feelings to disrupt that journey. We sang 'Dancing Queen' together with my daughter. Which reminded me of the first time she introduced me to another diva, Stevie Nicks. "Some people thought she was witchy, and she was in the way she could bewitch music. I love Stevie. She was the queen of music but she also had sass. She chose her own way." Kind of like my Aunt.

She was so so beautiful. I can remember staring at her photos on my grandma's wall, hoping that I would be as beautiful as her some day. I memorized some of her photos. She was so pretty to me, in both spirit and body. I emulated her when younger. I watched carefully, and many of my formative ways were because of her when I was under fourteen. She is part of the reason why I find 70's style so attractive and appealing. I loved her seventies looks.

"Is there a word that I'm feeling tonight? Happy and sad at the same time? You got me smiling with tears in my eyes....they say everything that goes up...must come down..."- Kacey Musgraves (*2)

"When it rains, it pours, but you didn't even notice, it ain't rainin' anymore. It's hard to breathe when all you know is, the struggle of, staying above, the rising water line. Well, the sky is finally opened, the rain and wind stopped blowin,' but you're stuck out in the same old storm again. You hold tight to your umbrella, well darlin' I'm just trying to tell ya, that there's always been a rainbow hanging over your head. If you could see what I see, you'd be blinded by the colours. Yellow, red and orange and green, and at least a million others. So tie off your bow, take off your coat, and take a look around. Cuz' the sky is finally open..."- Kacey Musgraves. (*3)

I have to be careful not to dwell too much on the last months of my Aunt's life to the point of being "stuck out in the same ol' storm again." She was a very different person to me, although with the same core essence, in her last year of life. It is important to honour and recognize the fight she had at the end of her life. It was a legitimate part of her journey. I can't write it off. But I also have to remind myself to not stay in the rain either. My aunt also savoured the colours in life. She was always a feisty woman with a lusty side, who laughed hard, loved fully, angered easily, and worked for every moment of her life.

Kacey also wrote on the back of her album; "There are different masks we all wear the represent different sides of ourselves. None of them are solely us and yet they all are. There's the lonely girl, the blissful girl, the new wife, the daughter missing her mother, the hopeful girl, the selfish girl, the sarcastic rhinestoned Texan, the shy girl and the life of the party, the winner and the loser. They are all characters on this record. None of them alone are me and yet they all are..." I hope, that even with the grief, my cousin can feel free to be each of those versions of her self. Just like her mother did. I hope that she will not be constrained by each role, but fully own the beauty and realness inside. I want her to eventually find her days in the sun amongst the shadows, while still allowing herself the darker days. She's still young and in her twenties, and deserves to live life with bliss, even though she will carry this sadness and the waves of grief with her through out life.

(Me and my cousin)
"Northern lights, in our skies, plants that grow and open your mind. Things that swim with a neon glow, how we all got here, nobody knows. These are real things. These are real things. Oh what a world, don't want to leave. All kinds of magic it's hard to believe. Thank god it's not too good to be true. Oh what a world, and then there is you..."- Kacey Musgraves (*4)
(My cousin with my youngest. She is called their auntie because she had no other siblings and I felt she deserved that role...just like her mom she has been incredible to my children. Especially when they were younger and we could spend more time together.)

Langeston Hughes wrote that "Life is for the living. Death is for the dead. Let life be like music. And death a note unsaid." Death is detailed, complex and non linear in feeling. Each person's grief story is legitimate and different. Those whom are left, are the living, and while they live, have to find a way to carry on too. Northern lights, plants and the beauty in everyday magic is a gift...but the beauty we see in the souls of each other is the highest of all. When that breath is taken, the fall out is tough to justify. I am not the one to do that for anyone. I just know that music brings me back to life.

"You can't find it sittin' on a shelf on the store. If you try to hide it, it's gonna shine even more. Even if you lose it, it will find you. There's no way to stop it, but they'll try to. Running like a river, trying to find the Ocean. Flowers in the concrete. Climbing over fences. Blooming in the shadows. Places that you can't see. Coming through the melody when the night bird sings. Love is a wild thing..."- Kacey Musgraves (*5)

When I was five or six, my mom brought the silky white dress into the room. She put my hair in curlers so I could rock the Shirley Temple look in the morning. Because my pretty Auntie was getting married and I was the flower girl. I remember, on her day, she bent down to eye level and whispered, "I am so glad to be sharing this day with you sweetheart. I just love you so much honey. You are SO beautiful in that dress. Look at you. All the young boys are gonna turn their heads when you walk in." She was affirming of my beauty and told me often that I was one of her most precious people. I remember looking at her beautiful face, framed with eighties bangs (that she actually pulled off) and her gorgeous tiara veil, and hoping that I would be as happy as her on my wedding day. At the reception the family sang, "Oh Donna" from her husband and she cracked up. I could never hear that song without thinking of her and how she looked that night. When I was asked to put something on a card for her filmstrip at her funeral, those lyrics were the first that came to my mind, "I know a girl, Donna is her name, and since I met her, I have never been the same. Oh, I love that girl. Oh Donna." (*6)

And I never have been the same. The people in our lives help shape wisps of ourselves. The month before she died I wrote to her, "Listening to your records. 'How Wonderful Life is now that you are in the world." (*7) She wrote back, "Elton. Oh that man can sure write songs." I texted next, "Yes, I tried calling. I was also sitting here thinking and talking to Hubby. He and I were discussing how you are one of the main supports we had for our marriage. We have always been forever grateful to you for liking us together. It is always been very valuable to us and will continue to be valuable as the years pass. Also, you have been one of the few people who have seen our children's disabilities and try to understand them but also have seen their spirits and been a lookout for them. Our kids will be forever grateful and have been partially shaped because of you. So I wanted to thank you for that. We love you very much." She wrote back, "So as I sob reading this, I just wish you were here so I could give you giant luvs, hugs, kisses and squishes! I just love you so much honey, your mom texted me and I saw your text then so I read it and you got mommy to put put on Facebook, wow! Had no idea you felt like that. And you know what? It came at the right time, I was sick today and couldn't get my pain under control, that sure helped!! Feeling much better now, thank you, I would phone you but it's late there and you probs won't read this till morning anyway, much love honey."

(I love how I am looking at her in the photo below)

"... I can show you strong, I can fight for you, I can try to move mountains if you want me to. But baby, I ain't wonder woman. I don't know how to lasso the truth out of you. Don't you know I'm only human and if I let you down I don't mean to. All I need is a place to land, I don't need a superman... Bet all that gold gets heavy. Weighing on her. I wonder if it's scary, always trying not to get hurt. I know how it feels. It ain't easy. There is a reason why you always see it in the movies...Because baby, I ain't Wonder Woman..."(*8)

My aunt was strong but she also had her struggles and flaws. Sometimes life broke her too. She was particularly upset about a procedure she had to do and texted me about it. I wrote, "You are more than any procedure done to you. You are more than your illness. You are more than a series of symptoms. Your essence remains in dignity even when you feel some of these things are undignified. Dying is horrible but there are moments of beauty like witnessing the strength of those who love you around and also in you. Seeing that generations will go on and pass part of your spirit onward with them. That they too will pass onward and their energy will change into new (or however one believes.) I read a quote that said that 'Watching the people we love die bit by bit is the hardest thing life demands until we recall that watching the people we love die bit by bit in a certain sense is what life simply is. It just usually takes more time for the bits to go by in some cases.'- quote from (?) I'm sorry this is happening to you- that your process is a painful one often. That you have to tread through unpleasant moments with not much to look towards for time here except time elsewhere. I wish you more moments that are pain free  and moments of dignity. I hope you can retain your spirit while you endure the final moments of what bodies tend to do- be it slow or fast (and she did). In a way yours is both- it expired too fast but is also taking you slowly in pain:( That's unfair and tragic in so many ways. I'm sorry and wish that burden could be lifted from you. On the flip side I see how much you still give to life just by breathing. Right now until your time comes. None of us know when we could go. You have had goodbyes which in a way is bittersweet. You make a difference to life by being you. You are loved. It's ok to be both strong and weak at once. To need help and to be...that some procedures are necessary - it's ok to have all those emotions. It is human and normal. Just know that you are not any less loved or respected for what you must endure. We will carry you onward in our hearts and our children's hearts because you helped shape us and in that you will live."

I was nervous after I hit send because I never know how people will respond to my weird, honest philosophies and sentiments on life. I sprinkled the text with heart emojis but I was worried I made it worse for her. But then I looked at her text back, "Awe my heart overflows with love for you my sweet niece! thank you for that! I just love you to pieces." I was relieved I eased her burden instead of stressing her out more. She always loved the blog posts I sent her and was one of my biggest fans. I always appreciated the time she took and will miss seeing her email address in my contacts and the thoughts of her that went with it...

I was on the treadmill today listening to "I Dreamed a Dream"(*9) and I became slightly choked up. The song expressed the sorrow of the moment. "I dreamed a dream of time gone by. When hope was high and life worth living. I dreamed that love would never die. I dreamed that god would be forgiving. Then I was young and unafraid. And dreams were made and used and wasted. There was no ransom to be paid. No song unsung, no wine untasted. But the tigers come at night. With their voices strong as thunder. As they tear your hope apart. As they turn your dreams to shame. And still I dream she'll come to me, and we will live the years together. But there are dreams that cannot be. And there are storms we can not weather. I had a dream my life would be, so different from this hell I'm living, so different now from what it seems. Now life has killed the dream, I dream."- Les Miserables. I would not wish the last few weeks of my aunt's life, of hell on earth, on anyone. There are dreams that can not be and storms that are almost impossible to weather. She had so many dreams left to share. But I am trying to focus on the ones she DID get to live.

My Aunt gushed over me and told me often what a character I was. She avidly protected and laughed at my fierce individuality and innocence. When I was seven, Auntie Donna came to me elated, "Sweetheart, guess what? I am going to have a baby!" Later she laughed and said, "Now don't you get jealous on me. You are still gonna be my sweet girl too, no matter what baby I have, but it will be like you get another special younger sibling to look after." My dark haired, elven cousin entered the world months later and I was enamoured. And also slightly jealous but my seven year old self got over it. My aunt predicted that one. She knew me well in that regard as her intense, scorpio niece. But she still made room for me though all of her being went into her little girl. The dream she dreamed became reality when she held her little bundle and her life was never the same. Her beauty can be seen through my cousin in so many ways. Her light is carried on within the life of her daughter.

Another phrase of my Aunt's was, "And don't ever forget to wipe off your face at night. Or else you will look like me! Always take off your make up honey. Wash and freshen up for a new day." (My dad snapped the blurry picture above when we were camping. I was a teen and even in the outback I was fastidious about my facial routine thanks to my aunt.) She passed the same practical wisdom on to my daughter. And really, when I think about it, it's also a bit of a philosophy. To wash off the grit and old bits and take a moment to savour the golden hours of life as one hopefully anticipates the next day.

Auntie Donna, how wonderful life was when you were in it. You contributed to so many people and their lives. You lived and owned every second that this world could give. I admire your strength and am in awe of the dignity you could muster through your varied trials. We mourn you. But we also celebrate you. Goodbye my rockstar aunt with the dyed red hair, beautiful make up, super sass, and large heart. Thank you for all you did to support, teach and love me and my family. We will remember. xoxo

2* Happy Sad- Kacey Musgraves

3* Rainbow- Kacey Musgraves

4* Oh What A World- Kacey Musgraves

5* Love is a Wild Thing- Kacey Musgraves

6* Oh Donna-- Ritchie Valens

7* Your Song/ How Wonderful Life Is- Elton John

8*Wonder Woman- Kacey Musgraves

9* I Dreamed a Dream- Idina Menzel and Lea Michele

Wednesday, March 21, 2018

The 120 Day Cycle of Blood. Pro's and Con's list of Iron Intake and Side Effects. The Crisis Point Of Low Ferritin/Anemia.

*My blog patterns show that during transitional months or generally around this time, my output of blog posts are higher. It's how I cope I suppose... This post is another addition to my fellow Low Ferritin sufferers. You often search my blog for posts. I hope this adds some validation, knowledge or fellowship to your journey.*

The 120 Day Cycle of Blood:

My Internist warned me the last time we talked in January about the 120 day cycle of blood. With all my reading I actually did not know this important fact. He said, " I know you are trying to convince me that you could take less iron. I understand quality of life issues and we will try it your way. But I can almost guarantee you that around April you will be back in my office needing to be hospitalized. I am continually surprised at your resilience this way, but the body has it's cycles. Would you PLEASE consider the iron infusions (I talk about why that is the last resort HERE.) If not, I could see you needing an emergency blood transfusion by summer."

To which I argued some more about my plans ect. and he replied, "The body has 120 day cycle of blood. Your blood work is ok right now in terms of Hemoglobin you are borderline and not considered Anemic by ONE Point. For the first time in over a year. But your Ferritin fell to a 5, and it is not finished falling. That is an unacceptable way to live. It is tough on your whole system. And THIS is the good news. You are benefiting from the iron input you quit mid November. Around the 120 day mark from the last time you were regularly taking large amounts of iron, you will feel a drastic difference. If I took blood work then you would be considered Anemic and you would probably be at a 2 for Ferritin again. Now let's talk infusions..."

I will readily admit that I did not listen fully. I DID tuck that information away to see how it would pan out. I tend to test what is told to me.
He was right.
He did allow me to propose a reasonable ish plan of moderate iron intake and not to be re tested until the Summer. He smiled at one point and said, "I really do admire the way you live your life. I like how you tell me honestly that you won't do something. Most people lie to me and then just don't take the pills. At least you tell me when you have not. I appreciate your honesty and the fact that you regularly walk on your treadmill, are conscious of your diet, and try to live life to the fullest while having this issue. But at the same time, you can not just ignore it. You can't keep running on fumes. Basically you are the car and you fuelled up years ago, and your car has managed to chug along but it's going to quit eventually. Are you prepared for that? The only thing that would save it at the point would be a blood transfusion if we are lucky and catch it. How do you feel about that?"

Honestly, at the time I felt like I was beating it- I was Superwoman. The iron was in my system from November but I wasn't suffering the quality of life side effects of the pills. For the first time in a year I felt strong. My workouts were regular and I could do more in a week than usual. I began to read again. I could sing. I was sleeping regularly long hours again. Life was pretty good. So I thought maybe my life was turning around. Thus, I stubbornly stuck to my plan.

About a week ago I hit the 120 day mark. My life fell apart almost over night. I could not make it through a work out without all my muscles seizing up. I was no longer sleeping through the night or getting more than 3 hours of sleep. My pain levels went up. I was panicky because I could not seem to catch a breath. My limbs were constantly frozen and my nail beds were purple and cold. My hair was falling out in large, alarming lumps. Stairs were once again my enemy. I was asking my children to grab me things because it took too much energy to get up. It was almost like black magic. Immediately I was different and each day the quality went down a little more.

And of course, it didn't really click until last night. I thought it was because my cycle was late. I blamed it all on women's issues. But my cycle has not been late since November. Being late was also something that happened when I am lower on iron. For the last few days, I was dizzy and out of breath. Yesterday it was so scary, I took a large dose of iron at supper and a couple hours later I felt, if I stayed in bed, that I had a little burst of oxygen. I felt like I was hooked up to one of those lovely nose masks at the hospital. I was craving Coca Cola (I have not consumed sodas or pop in over a decade besides club soda so this was unusual) and rocks. And then it all clicked.

Low iron also causes insomnia ironically. A sufferer can be 'organ weary' exhausted, and still not be able to sleep. I have to admit, that was the main reason I first considered iron transfusions. I read some stories where women said that for the first time in years, they slept through the night. I was desperate for that...but then in November things started to improve so I thought...maybe? Maybe this is the end of a phase?

Low ferritin is NOT a phase. It is cyclical to a point. For someone who can be intelligent, I can also be pretty dumb. It's annoying that I convinced myself of this.

The Negative Symptoms of Taking Iron:
*These symptoms are different for everyone and depend on dosage too. These symptoms are what I experienced on a regular high dosage after charting for commonalities. Many of these are proven on multiple medical resources. This is the Pros and Cons list I gave to my doctor.*

Upsides of Iron:
- Helps the bone weary tired (minimally but definitely helps with breathlessness.)
-Less out of breath after taking it awhile
-Prevents heart attack and stroke apparently
-Less hair loss after time on it
-Slight memory improvement after awhile
-The obvious point of storing Ferritin and getting Hemoglobin to "normal" levels.
-My nail beds stop being purple most of the time.

Downsides of Iron:

- Can grow unknown cancer or add to risks later in life
- Aids in bowel disease/ Can help trigger later bowel diseases.
-Causes Bowel Inflammation (this is a real problem that messes with life.)
-Constipation and Bloating (to the point of needing...well, NOT FUN.)
-Panicky feelings at first and suppressed feelings…happens each time. I am either numb, panicky or angry on iron ( maybe due to liver processing) but it is real and it is frustrating. Whenever I am off for a few days I get back to a "normal" range of emotion. This has also been proven on multiple iron forums for many women.
-Night Terrors. These are different from nightmares and happen each time I take iron and are done as soon as I quit. They are gruesome, terrifying and I don't know where the horror show comes from because I am careful what I put in my mind...this is one of the toughest aspects for me.
-My family admits I am crankier on iron. This is also due to the sensory overload causing an over run system from all the side effects.
-Stomach pain.
-"Pregnancy like hunger." Or "Diabetic Hunger" pains. High doses of Iron make me DESPERATE for food when it is time to eat. The stomach is more inflamed and hunger pains are more pronounced. I was diabetic during one of my pregnancies. That drop in blood sugar felt similar to what it feels like around mealtime after taking large amounts of iron.
-Gut and liver pains.
-Fatigue (of a different kind from all the symptoms.)
-Insomnia! (This point you can't win either way. The ONLY time when this is not an issue for me is when I am in a 120 day cycle benefiting from previous iron consumption but not currently taking iron. Then, and only then, I get semi regularly, satisfying sleeps.)
- Vivid dreams and nightmares that disturb my sleep which go away after a few weeks off iron.
-Remembering to take it is a problem and stress due to executive functioning which is draining.
-Blurry eyes (that are fine off of iron.)
- Unpleasant taste (metallic.)
- Headaches that ease up when I am off iron unless I am very low and then headaches are a problem anyway due to the lack of oxygen. Really you can't win with some of these points.
-WEIGHT GAIN. The last three times I have tested this - it takes 3 weeks OFF of iron and I do nothing different and I start to lose weight. Happens every time. But I need to get to the three week mark and not take it all to get to this point. And I only lose about five pounds total after.

                                                             The Crisis and Fall Out:

As you can see, I feel better overall off of iron therapy, until my levels fall so low that I'm desperate again for the iron. Off of the pills I have a better quality of life but then eventually my iron drops and my quality of life falls again anyway. I have written multiple posts about this in my Low Ferritin label. THIS post explains the constant Catch 22.

When I actually counted the days down and realized what was happening to me last night, I went into a trance. I put my headphones on and traced the sun patterns on a lamp that was sitting next to me. Repetitively. I didn't realize tears were streaming down my face until I looked up and my whole family was surrounding me. It probably did not help that I was listening to the song, "Where do Broken Hearts Go." Ha. I took my headphones off and explained what was wrong. My son said, "I heard you working out and you sounded horrible. I wanted to tell you to stop. So guys we will have to take turns doing mommy's dishes because it will kill her." My husband added, "Maybe you should stop working out? If you have to drink coffee just to get through treadmill time and you are out of breath, maybe it's not for you right now?" That is when my face crumpled and I full out sobbed. My daughter crooned, "Oh no, I hate it when mommy cries. Mommy and (her brother) when they cry are heartbreaking because they rarely full out cry and it seems so...well just heartbreaking..."

They were all sweetly consoling me. If you have had chronic illness you probably understand why I cried. It is that moment when you feel like life is going good, you've "got this", you finally feel capable. And then it all comes crashing down.

I had gone on the treadmill every day, without fail, other than a few times of sickness, since October. I forced myself to do at least 20 minutes on days that I felt like I could not take another step. I felt accomplished for this discipline. It also improved my mood, blood pressure, and felt like I was doing SOMETHING. To think of giving up the one time of day I felt accomplished, happy and good, was asking a lot. I think I will still walk 20 minutes every day instead of 40 but I will have to keep my pace below 2.4. That is when I get out of breath now, so that will have to be my limit. That is devastating enough. Obviously if I get to the point I have been at before, I won't even be able to do that. I am hoping not to get there. But it seems like it could be inevitable.

I was also crying because I HATE being helpless and in a Catch 22. Those are the worst. I am dreading the next few months. I have to take large amounts of iron again to feel better in 120 days. I have to feel terrible AND suffer the side effects of the pills and not feel the results for months. That is not something I am good at. Yet, I also feel I have no choice. I hate feeling like I have zero choices. But, at the same time, I have to remind myself I DID benefit for January and February, and I did technically choose it.

"Some nights I stay up, cashing in my bad luck, some nights I call it a draw. Some nights I wish my lips could build a castle, some nights I wish they'd just fall off..." I guess I had a couple months of goodness. Sometimes it's a draw...while others, well, it could be worse. Yet, that does not negate the struggle. I will admit to nights re- researching into Iron Transfusions but I just can not see myself doing that without being unconscious and having someone else choose it for me. It's one of those irreconcilable moments we all face in some regards...

I had one book left in a series I was reading...and five days ago I quit reading. That isn't coincidence. When my iron falls, I can barely concentrate on things. I lose interest in most pursuits. I go to "survival" mode. At the time, I wondered what was happening because I NEVER quit the last book in a series I love. In fact, I gobble up books that I enjoy, and especially can not wait to read the ending. I stopped playing 'Snitch' at lunch time with my family. I just sat in the corner of the couch and stared off into space. Again, I blamed it on a severe cycle of hormones. But, now that the pieces are together, within context, everything ties into my blood. If I do end up getting my cycle, that will also worsen my state due to the heavy amounts I tend to bleed. So yay. It is all looking so good right now.

That was sarcasm. To which I have also had a lot of lately. Soon I will not have energy for that either. I know how this goes. I have been here before. (Again, see the bottom label for more.) All I can do in these moments is hold on tightly to what I DO have. Gratitude mixed with reality. I need to face up to reality and do what I need to do to survive my predicament and be the best I can be within reasonable choices, but I also need to remind myself to be grateful for what I have and what is in my life. Beginning with this guy...

I have been there for him, and he has been there for me. I tend to be his rock emotionally and he is mine physically. He likes it when I need him (for some reason.) When my iron is low, he tends to step up his energy level. I am lucky "I'm in love with my best friend. Lucky to have been where I have been...Lucky to be coming home again...Lucky we're in love in every way...You (he) make (s) it easier when life get's hard."

Some people go through this alone. If you are one of those people, please try to find support. Ultimately, know that perhaps hospitalization is a good route. I have managed to avoid it BECAUSE of my support system and my large aversion to hospitals in general...but if you do not have anyone, these times are serious, and perhaps you should consider options that are opposite of mine. Please remember that this is not medical advice but my own experiences in this realm of Chronic Disease. Some of my choices have sucked. Others I am quite proud of. Most have equalled out to neutral (benefits and downsides either way.) In other words, don't make my choices if they do not feel right to you. Find your own way...and hang in there. That is what I'm telling myself, "This too shall pass. It's all a cycle. Try to embrace what you can, choose the better options, grieve what you need to, and BE whom you are AT THIS MOMENT. That is all you can really do."

Songs mentioned: Where do Broken Hearts Go?- Whitney Housten

Some Nights- Fun

Lucky- Colbie Caillat and Jason Mraz

Monday, March 19, 2018

The EXTREME, Frustrating Fluctuations Of A Canadian "Spring." How I Cope and Keep My Sanity In the Dreary Months. Coffee, The "Unwritten" Perspective, Music and Other Mechanisms.

 Spring has "officially" arrived! Er...Our version anyway. Our Springtime signature sign is that there are patches of brown peeking through the snow. Doesn't it look so welcoming?!? When I viewed this photo, I realized why sometimes people think Canadians live in a "Frozen Desert."
"Canadian man, at your service from the land of the chill. If I can't warm you, baby nobody will...A genuine Canadian man. Strong and free. That's the true north and baby that's me...Well, it's hush hush, while we mush mush, on my dog sled made for two. It's cold outside, but OH! What a ride! to the warmth of my Igloo... Canadian Man, That's me, the icebreaker supreme, Forget your American dream, and wake up to Canadian Man.."- Paul Brandt (*1- This song was played for my Husband's pictures on my Wedding slide show.)

Canadian Weather can be summed up in the eerily accurate pin below. I have used my winter jacket in the summer and I generally don't put it away with the Seasonal changes. We have had snow in July. I think the only month I have yet to see snow is August. But I'm sure we have had that too... On the flip side, sometimes in the winter, I don't need a jacket, but the next day I require a toque, mittens and the cold care works. Our weather is part crazy in a endearing way (like how I think of myself) and quite crazy in a frustrating way (like how most others think of me!) Yet, in all of it's chaos...I still love where I live. I am explaining my weather specifically because I get blog traffic from all over the world...except my home country. I'm perhaps redundant to Canadians? Eh, oh well...
Recently, our snow was beginning to melt, hope was on the horizon, and then we had enough snow to do this:
I captioned it, "Do you want to build a snowman? (*2) P.S. You're welcome- for getting that song in your head:)" And my husband cleverly commentated, "Yes, I want to build a snowman and then I want to blow it up. So sick of the snow." Yes, yes, most of us seasoned Northerners also want to vent our aggression to our current predicament. Usually we have a few Chinooks to break up the winter, but this year the cold lasted far too long. In some ways the excuse to bury into comfort is welcome, but when there is green elsewhere, flowers blooming, and pictures of people in flip flops, it is tough not to want something that is NOT given. 

I have written before HERE and HERE about how Canada's crazy weather builds resilience. There is a stark beauty, a cold, aloof sort of dangerous moodiness that is unique in it's presentation, even though other countries also can get vast fluctuations. Canada is definitely seasonal. 
We enjoy a lot of bright sun. Sometimes the sun is too bright, when it bounces off the reflective snow. I wear sunglasses more in the Winter months. But I LOVE this about where I live although sometimes it makes sense that there is not a massive take over of our country. Who wants cold, drastic weather for more than half a year?  (Apparently I do.) The days I find the toughest, are when the fog or clouds cover the sky and it becomes gray. I can not handle the dreariness. The sun is my fuel. The unusual, regular amounts of fog have been dampening to the spirits. Near the end of February I felt like I was going a little crazy. I craved Spring like a PMS need for chocolate. The song from State Fair kept ringing in my brain, "I'm as restless as a willow in a windstorm, I'm as jumpy as a puppet on a string. I'd say that I have Spring fever. But I know it isn't Spring. I am starry eyed and vaguely discontented. Like a Nightingale without a song to sing...I haven't seen a crocus or a rose bud or a robin on the might as well be Spring."- Rogers and Hammerstein. (*3- This song was my favourite "restless" song as a pre teen. I sang it wistfully out my window. I adored this musical. Ha- Yea, I was not nerdy at all.)

There were weeks in February when the sun rarely shined. I started to feel like Gollum and his counterpart Smeagal. I was having conversations with myself that probably were not healthy. One side of myself was trying it's best to be positive and grateful, while the other side was aggressive, moody and depressed. Before I began descending more into this grim fantasy, I decided that I needed to take action. If we were lucky, Spring would come near the end of April ( in the sense of green grass and blooms), but most likely it would be near the end of May. Which meant that I had at least 2-3 more months of white or brown and a general lack of colour to endure. During that week in February I made a decision. I was going to try my best, to not just get through the season, but embrace it. I decided to view it through the lens of "Pretend this is an all year winter. How would you live if this was your only Season and this was your ONLY story?" I jotted a few coping mechanisms down and used them as a guide, and then I chose to wake up every morning and be intentional.

My ENFJ daughter teaches me a lot about being open, joyful and "poppy." When we watched the movie "Trolls" and then the seasons of Trolls on Netflix, our family was blown away by how Poppy reflects the disposition of our delightful girl. If she is 'Poppy' - I am 'Branch.' Each time I hear the Season's theme song- I smile; "Live it up! Every day you wake up singing. Turn it up! The party's just beginning. All together you and me. Hair in the air. We' re a family. We've got everything we need.  Hair in the air- cuz we're proud to be. Celebrating who we are. Yea, we made it through the dark. Harmony is everywhere..." - (*4) Trolls Seasons Theme

My daughter starts her day singing and brings harmony quite literally. She has alarms and playlists for going to bed, working out, doing chores, doing school work, and waking up. I don't think she is ever not surrounded by music. She is worse than I am. Which is saying a lot, because I have a song for every few sentences I hear or utter. During the day, at home, I will often burst into song, when certain phrases are said or when things pop into my head. I communicate more in song than any other medium. She is louder, brighter, and caters toward more of the poppy genre, but she has taken my gift and multiplied it. Sometimes it drives my husband nuts when he walks in from work and the music is blasting. And I will admit to moments of slight irritation if I have had to listen to the Hairspray soundtrack one more time. But I also understand that music IS a language, communication, and coping mechanism all rolled into a melodious cacophony. We all have our preferences. I decided that I could afford to adapt more of her happiness strategies when the outer world looks bleak. I bought the lame Trolls song...and realized it wasn't so lame, because it made me smile and think of ridiculous happy moments and my "party beach" daughter who blossoms even in the winter snows.

Music has been my first comfort. On days that I forget to put some tunes on or get too lazy to find a playlist to suit my mood, I realize that my psyche takes a hit. I have also discovered that I need to move every day. I love having a treadmill because the weather never stops me from taking at least a half hour brisk walk. I also don't suffer injuries (Ok, I admit I still do but I get LESS injuries on the treadmill.) Where we live, the danger is real. Signs are on hospitals and on buildings to "Watch your step" or to "Beware of slips and trips." I am klutzy anyway, and a leisurely stroll or outdoor workout is not for me in the best of times. Thus, I watch Glee or blast my tunes while I strut on the Treadmill. Without fail, the Glee rendition of "We Are Young" (*5) gives me pep in my step every time. I love the background, the simplicity, the connections between characters and the harmonies.

To cope with colder times, I have also been intentional about food. I am always counting calories and eating healthy due to my chronic conditions and general inability to lose weight, but I make sure that I choose warmth on cold days. I also allow myself, within reasonable amounts, the comforts of home baking occasionally. It is amazing how a chewy, gluten free donut, fresh from my mother's oven, can lift the spirits. We also had a "picnic" in our library with all the foods of Summer, and with the sun beating in our windows and heat cranked up, we 'pretended' it was actually Summer. A little bit of imagination can give a healthy dose of sanity.  I also began building up my low tolerance to coffee in the mornings. Sometimes I can not handle even a cup, but I can now drink a mug of delightful coffee before lunch. This has given me a surprising amount of resilience. I get now why some people have dubbed it "the nectar of the gods." It truly has some mental benefits. "Coffee time, my dreamy friend, Let's listen to some jazz and rhyme, and have a cup of coffee...Greeting time, the music box is beatin' time, it's good ol' fashioned meeting time...Let's drink a cup of coffee."- Natalie Cole ( *6) It is important to note that I do NOT drink coffee every day nor do I consume on an empty stomach (See HERE and for a little article on coffee. And THIS.)  Vitamin D has also benefited, probably more than song worthy coffee.
I keep reminding myself the summer will come and bring it's own set of problems. Perspective is everything. I have had to ask myself, "What does this season give that other seasons do not?" I have decided to build my days and weeks around what the season GIVES.

I love the lyrics from Natasha Bedingfield's Unwritten (*7) because of the possibility and perspective depicted:
"I am unwritten. Can't read my mind. I'm undefined. I'm just beginning, the pen's in my hand. Ending unplanned. Staring at the blank page before you, let the sun illuminate the words that you can't find..."

What if every day I woke up thinking that it's my day to write on the pages of my life? What if I picture myself as a glorious, sun dappled piece of paper but that I also get to be the ink filled pen? I love the thought of the sun illuminating the words that can not be music.

"No one else can speak the words on your lips. Drench yourself in words unspoken. Live your life with arms wide open. Today is where your book begins...the rest is still unwritten..."(*7)
Obviously, like most good lyrics, this can be taken as both philosophical and literal. For the literal, I often will cope with harsh weather and the doldrums by writing. 'Drenching myself in words unspoken.'  No one else can write exactly what I write (well, without plagiarizing) nor speak the way I speak. That is an incredible DAILY gift! What freedom which enables me to live with my arms wide open to possibilities. A beautiful sentiment.

Another positive about a cold season, is the concept of hibernation. Winter gives a fresh cold and an excuse to be inward. It provides a bit of insulation before the long bursts of dramatic energy that is summer. Our Summers are often spent providing, being outside, and preparing for Winter. A prolonged Winter season can mean more downtime indoors (This Canadian gal does not love her skating, sledding nor snowboarding. But I would still consider myself "a Northern girl. Strong and Free. With Four strong winds to carry me." (*8) but hey, maybe another positive for your lists?)

"I break tradition, sometimes my tries, are outside the lines. We've been conditioned to not make mistakes, but I can't live that way..."- Unwritten. (*7)

Sometimes I allow my sassy nature to come out of it's shell during the long winters. Since I am engaging naturally with less people, I explore the mistakes within myself and allow for more exploration of my gifts, strengths and weaknesses. I am happy to announce that I regularly make mistakes. Many of them I feel guilty for but then I learn to embrace them and the cycle begins again...and it's beautiful in it's own way. Winter protects a bit of this mode.

Since my new mentality, I have indulged in reading more books guilt free (!) to both my kids and self. I started reading Rick Roirdon books. Since I am well versed in myths, I found the books highly enjoyable and am now currently caught up on everything he has ever written. Our family has binge watched shows that we will not always have time for during the Summer. We are almost done "Crash Course World History." Our discussions after have been insightful and fun. I recently learned "Snitch" and I love winning at our regular lunchtime routine.

"Deep in December, it's nice to remember, although you know, the snow will follow. Deep in December it's nice to remember, without a hurt, the heart is hollow. Deep in December it's nice to remember, the fire of September that made you mellow. Deep in December, our hearts SHOULD remember, then follow."-(*9)

Sometimes, a girl has to wistfully dream. I lurk on Spring Pinterest or Flower boards. I disappear into images that are opposite of where I live on occasion. Because imagination can comfort. "Try to remember the kind of September, when life was slow and oh so mellow. Try to remember the kind of September when grass was green and grain so yellow... Try to remember when life was so tender that no one wept except the willow. Try to remember when life was so tender that dreams were kept beside your pillow. Try to remember when life was so tender that love was an ember about to billow. Try to remember and if you remember then follow..."- Josh Groban/ Fantasticks.(*9)

A friend in the States commentated to me recently, "Your house is like a conservatory on the inside, lush and full of colour, plant life and almost like an indoor garden. My home is lush on the outside with greenery all year long and infusions of colours but indoors I have stark walls and minimal decor. We are opposite." In short, that is the biggest way I cope. My home is currently growing oranges, limes, aloe vera, and flowering plants. My other plant life thrives because of our general copious amounts of sun, even on  -45 Celcius days. Thank goodness that seems to have ended! The number one reason I thrive inside, is because I have tried to make our inner home reflect the outdoors in all four seasons, as much as I can while being comfortable. We have bare, white winter trees to hang jewellery, Autumn palette colours, Spring buds, and numerous summer plants (97 was our last count.) Our home was like this before the trendy plant movement, and will be if plants ever (gardens forbid) go out. The furnace or fires are always running, so the fresh oxygen every few feet serves our well being.

 "Release your inhabitations... No one else can do it for you, only you can let it in..."(*7)

When I am desperately clinging to my sanity, I commit (another) social norm "no no." Yes, I release my inhibitions and play...dun dun dun... Christmas music. This is saved only for desperation because otherwise it's effectiveness would be rendered neutral, but I have, in my lifetime, probably listened to Christmas during each month of the year. Christmas songs are my childhood candy. They are like worship songs to believers. I know that many of the lyrics I probably disagree with in theory, but I still love them. Just like I still love me some Amy Grant or Michael W. Smith occasionally. I can re interpret most lyrics, but the ones I can not, still are played at Christmas. I am traditional like that. The songs bring me back to when I truly believed in magic. I DID believe there was a Santa and I loved the concept of Jack Frost tickling my nose because it often seemed he just took a chunk off my skin and left me frostbite. I liked the cute baby in a manger and sparkly stars. Jolly St. Nick and happy christmas trees shimmering beget some of my calmest memories. Beyond joy, goodwill or gifts, Christmas music calms me down. I had a childhood that was full of unknown sensory overload. Christmas was the only time that some of the sensory suited me. Thus, when I am at my darkest, I turn on Nat King Cole's "Chestnuts Roasting on a Open Fire/ The Christmas Song." (*10 and home video clip below) Last week, I had to blast it on the record player while watching my kids frolick in the snow...and I was able to breathe again.

Today IS where your book begins. Again and Again. On this first day of Spring, what are you going to write in your story? How do you cope with the Seasons of life?

(*1)Canadian Man- Paul Brandt

(*2) Do You Want to Build a Snowman- Frozen

(*3)May as Well be Spring- State Fair/ Rogers and Hammerstein.

(*4) Trolls Netflix Theme Song

(*5) We are Young- Glee ( I think this is better then the original...Sorry Fun)

(*6) Coffee Time- Natalie Cole

(*7) Unwritten- Natasha Beddingfield

(*8) Northern Girl- Terri Clark

(*9) Try to Remember- Josh Groban/ Fantasticks

 (*10) The Christmas Song- Nat King Cole