My Caregiver Left

Yesterday was my nurse/caregiver’s last day. She’s moving out of state, and is beginning her new life in semi retirement. I’m a bit anxious to find someone to fill her very large shoes, but truly excited for her and her new journey ahead. She has more than earned it after a lifetime of looking after people.

She began her nursing career by working in every single unit in the hospital, but in more recent years, she’s done the highly specialized job of a home healthcare worker. She will take on a patient if her church has been contacted with a special need in the community, but more often, she works in home hospice care. She has a calling for it.

You wouldn’t believe the stories she has told me over the last 2 years!

Like the one about the old man who she realized was in his final moments, so she ran upstairs to get his wife. She encouraged his wife to crawl into the bed with him, and tell him everything she wanted to say to him. His last breath was taken in the arms of the woman he spent his life with, as she whispered her love into his ear.

Another story is the not-so-old man who was fighting so hard to hang on. Finally, she asked his family to gather around his bed and tell him out loud that they were all there, and one by one they told him how much they each loved him. He hadn’t been conscious for some time, but he must have heard them because he let go that night, surrounded by his family.

(She says sometimes at the end, people wait to hear from a particular loved one before they can let go.)

Or the one about the woman who was rushed into the ER after a terrible car accident. Later, she was finally stabilized and unconscious when my nurse was cleaning her up.

Then suddenly the woman sat straight up, with her eyes looking wide in front of her, and said out loud, “Jesus, you’re here!”

Then she fell backward and flat lined.

This is how I see her. There are nurses and birthing coaches whose job is to help give birth to babies, but on the opposite end of life, she is there to help ease terminal individuals out of this world in their own natural time. Kind of beautiful, isn’t it?

She played a very different role in my life, however. She came in to assist me with errands and personal hygeine tasks. For me, it eases some of the stress on me and on my relationships to have a professional who I feel comfortable asking for personal assistance, as well as for the additional things I wouldn’t be inclined to burden someone else with. For example, if I’m feeling nauseous, on a rare occasion, I might ask her for a cup of herbal tea. I wouldn’t ever bother someone else to make me hot tea (literally never), but yesterday, the tea kept me from having to take my anti-nausea medications which sedate me, and it enabled me to eat something.

It might be a small favor from her perspective, but it’s a luxury most people in my position simply do without. I tend to ask for necessities like food, drink, and clothing, and have learned to let most other extras fall to the wayside. If you have someone in your life, whether it’s a spouse, parent, friend, or professional carer who is happy to do the extras on occasion, then you know how special those people are, and how much they care.

I can’t tell you how positive it is for a person’s mental health and well being to be given some options and control back… especially if they’ve had many of their personal freedoms taken, such as by disability or illness.

When she came into my life as a part time carer/helper, she understood what it’s like to be in that “in-between” stage after a divorce, and she also had the benefit of knowing me as a healthy headstrong teenager. When I told her my secret– that I was hoping to move into a nearby apartment/ shared house, she was one of the few people who responded with excitement!

Amazingly, she didn’t ask if I was able, instead she saw it as a matter of making it possible. And then she helped me make it possible!

Together, we spent this entire last year planning, packing, moving, and then finding the right assistive devices to make the apartment accessible and safe. She was far from the only one, of course, but her belief and encouragement have been an incredible driving force and confidence builder.

This year has been such a positive growing time. I’m very glad that I took the leap toward independence, regardless of the obstacles. Looking back on the last 2 years with her, I believe that her timing in my life has been purposeful.

I’m going to miss her friendship the most, but as her friend, I’m so happy she’s having her own big life adventure. Maybe it’s silly but any sadness is being drowned out by the excitement I feel for her.

Now I’m praying for someone new- the right someone to come and lend me a gentle hand.

It can be a daunting prospect, but I’m choosing to trust that whoever it is will be the right person once again.

Thank you for visiting.

Take good and gentle care of yourself,

💙Mary🦋

Discussing Chronic Illness & Disability Globally

Are you in a heat wave? It seems the entire country is encountering record high’s this week. Our AC has been pushing so hard that it shut down! It got ugly in here, but thankfully, it wasn’t out for long.

Just the short spell of overheating, and increased pain gave me a better appreciation for the privilege of air conditioning. Things which are so commonplace to us in this part of the world, are luxuries to others who don’t have the same amenities.

That’s something I’ve been considering more and more in regard to health.

Not that we should compare ourselves to anyone else, but it can be valuable to approach your life from a different lens now and then.

It’s inspiring how strong people can be, beating the odds every single day no matter what challenges they face.

So, I share my own perspectives with you in the hope it encourages you in your life as so many of you have encouraged me.

For anyone else in this country, my circumstances are quite the opposite of what anyone would hope for.

But for people in so many other parts of the world, how privileged might my life seem to them from the outside looking in?

I have running water, new clean clothing, a comfortable bed, air conditioning, food to eat every single day, and electricity for countless electronics and assistive devices. I have people who love me, ready access to medication and health care specialists close to home. Most of the things I need are only things I want, and what most others simply live without.

In other areas of the world, or in another time in history, I wouldn’t have chronic illness- I would instead have a terminal illness.

So many are dying globally from diseases that can be managed, even treated successfully. I can’t even imagine living the life I’ve been handed in an area where water is miles away, let alone a doctor. But there are children, teens, women, and men who do these same battles each day armed with so much less.

It breaks my heart to think about how people go on living in the same unimaginable pain, and try to accept these very same conditions without the hope of treatment so many of us have here. But, I imagine their lives aren’t built around doctors, medications, and treatments, but instead, seeking to find more meaning behind the curtain of life.

In my reality, it’s easy to fall into depression over the people and life opportunities that I’ve lost in the wake of illness.

Grief is an important part of processing major life changes. There’s nothing wrong with sadness and sorrow. Self loathing and hating my life, however would be.

Still, I struggle with feelings of hopelessness, as is common for all of us fighting chronic pain and rare diseases. As if our bodies aren’t suffering enough, we can suffer just as much in mind and spirit.

I suppose that’s why the mission of seeking out hope is so meaningful to me. I know we don’t always have the strength to find hope for ourselves; our lives at times appear devoid of all light. That’s why I wanted this to be a place anyone could reach out and find it when needed.

A short online course on the history of disability last month had quite an impact on me. Individuals from India, Japan, China, Africa, Australia and the UK shared their personal experiences living with various impairments.

Around the world, people like myself are viewed as cursed, and are disowned by society. Many believe their conditions were brought on by sins from their past lives, or they believe they are being punished for wrongs done by their ancestors. In many parts of the world, society sees disability as contagious- even demonic. It’s not uncommon for disabled children to live on the street, or to be “put away” in facilities for life. We have a shameful history of treating our disabled brethren in a less than dignified manner here in the states as well.

I think of my own faith and how it has shaped my experience through this journey. Jesus was never afraid of being seen around sickness, disability, poverty, or with the people who had been most marginalized. He put a spotlight on the parts of society which had been ignored. He didn’t run away, He ran toward people who were suffering.

“Hardship is but for a night, but joy comes in the morning.” That promise of an eternity of joy and healing gives me hope to continue facing each day. I would have lost this battle long ago had it not been for His strength.

I’m not the young woman I was 13 years ago- I’ve been changed by this journey.

There’s always a new version of us that emerges from the flames of adversity; we have to get to know ourselves again and what each new chapter of life will bring next.

I know having multiple rare diseases isn’t a life anyone anywhere would wish for.

Yet, this is my one life, and I’m tasked with finding a way to make the most of the days I have. That challenge to myself can seem impossible, but I’ve become convinced that the fight is worth it. My life is worth fighting for.

And so is yours.

*******

Below is more information about our disabled brothers and sisters around the globe.

-Today in the United States, chronic pain patients are often denied treatment, especially if their condition responds best to opioid pain medication.

-In Japan, women were forced to terminate their pregnancies if the baby was found to have an abnormality. (This law was abolished as recently as 1995.)

-In China, disabled individuals are depicted on tv like side shows which doesn’t translate easily for disabled individuals living in society.

Concerning statistics.

• 70 million people need a wheelchair, but only 10% have access to one
• 360 million people have significant hearing loss, but less than 10% of people who need hearing aids have access to them.
• 93 million children worldwide have moderate or severe disability

Mental Illnesses are on the rise worldwide.

• Depression: 300 million people
• Bipolar affective disorder: 60 million
• Schizophrenia & other psychotic disorders: 21 million

Chronic Illness has become a worldwide epidemic.

• 300 million people live with Rare Diseases (1/2 are children).
• Chronic Pain effects 1.5 Billion people around the world.
• It’s estimated that 60% of the world’s population has at least one chronic illness (highest percentages in developing countries).

See World Health Organization and NORD (National Organization for Rare Diseases) to read more.

Chronic Illness and Surrender

Inspired Impressions by Danielle http://ccconvoitise.deviantart.com/art/Danielle-436267734

Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.

It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.

When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans. 

My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch. 

No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals. 

I was in control. 

Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path. 

Surrender is a difficult topic or act for most of us to comprehend.

I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?

Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course. 

“Do you want to do this yourself?” a nurse once snapped at me. 

Oops, I thought. But then…I knew my answer would have been, “yes.”

Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind? 

Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.

They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.” 

Illness can become your life if survival becomes your new goal. 

There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes. 

Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.

I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness. 

The world tells me to push, to fight, to Just. Keep. Going.

But I learn quickly that there is no push  in this game. Only tricks, and cheats, and strategy. 

It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.

Illness owns my body. 

There is no free will flesh. There is no- push for one more minute.  There is no- if I just take this pill.

This body has been exchanged, kidnapped, swapped for a rag doll.

Once, asking for help seemed an impossible exception only made in the most dire of circumstances. 

Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this? 

What better picture of grace?

Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray. 

Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.

My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.

God is in control, they say. They say it like an empty cliche. 

Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior. 

In this broken body, I see freedom.

(Re-posted from 2015)

Sliding Doors: An exercise in “What If”

“Pieces” self portrait

Sometimes I feel as though I’ve slipped into an alternate dimension. Like there’s another version of me living simultaneously while I live my own life. She’s the same age. Her appearance is relatively the same. But somewhere along my lifeline, she and I took different paths. I am living out this fate, and she is living out another. 

I’ve always tried to steer clear of asking what if. It never seems to serve any purpose other than cause unneeded longing and regret. But, after the last few years, and all of the sudden changes, my mind is sputtering to catch up. I’m left with the feeling of… displacement. This what if exercise is definitely risk to me emotionally. If played out fully, I hope it will help me sweep the shattered bits back over into my dustpan. 

This past year, I can’t help but feel as though I’m in the wrong life. I can’t shake it. 

I imagine what another version of life might be now. I dive into the best and worst of my soul twin, and play out her footsteps. 

I sort through the details of her life. There is hurt, longing, and regret of unfulfilled dreams that come along with playing out these fantasies. I’m afraid of going through the looking glass. How deeply will this cut me? But in the end, I hope the exercise will help in some way. 

It’s like the movie Sliding Doors; I imagine myself making one different choice and living out my life in a parallel universe. 

In one reality, I’m still married. I never fell down those stairs in 2004, we had 2 amazing children, and I have the career in psychology I once hoped for. In this reality, I’m just as outgoing, adventurous and fun-loving as I was at 20. This version of me loves her work, she loves helping people in new and experimental ways, and if she ever finds time, she hopes to write a book about her work some day. I imagine her life busily driving her children to baseball and soccer, standing back stage smiling at ballet recitals, and taking pictures at music festivals with her beautiful family. She loves her children and husband unconditionally, they have a house filled with laughter, and they show her love and affection in return. Every couple months she sells handmade jewelry at an art fair- this is when she feels most like herself. Even though she counsels others effectively, she never had time to resolve the issues from her own childhood, and it shows now in her behavior with her/my parents. She empathizes well with her patients, but she doesn’t understand their suffering, and is frustrated when she can’t fix their problems. Her family stopped going to church and volunteering together- she deeply regrets that for her kids. 

Maybe I chose differently after high school graduation, and followed my dream of aid and mission work. Another Mary has been living in a far-off village building wells and working with abused young women for several years. She has collected a different language for every country she has lived in, and always looks forward to her next project. She never married, and rarely regrets the decision to stay single and forgo becoming a mother. She is strong and healthy, but tired, and isn’t quite sure where home is anymore. She wishes she could fly back to the states each time a friend or family member asks her to come to their wedding, birthday…or hospital bedside. She lives a life most can’t understand, but she wouldn’t trade her life of service for anyone else’s. 

There’s yet another version of me who never moved away from New York City. She stayed on the path to pursue an art career. This version of me has short, messy bleach blonde hair, and wears an old motorcycle jacket she stole from an ex boyfriend. She works at her friend’s bakery so she can pay her bills. This Mary struggles with depression, but the angst feeds her art so she doesn’t get help. The mental illness ruins her romantic relationships, so she’s lonely in a big city. She has a modest art following online, and has a large network of colorful friends who keep her very busy. She sings in an indie band for fun, writes art reviews for a small magazine, and volunteers teaching sewing classes to inner city youth on the weekends. In her heart, she hoped she would have found more success by now, but tries to remind herself, art isn’t about accolades. 

I imagined my existence if I had been born into one of the many communities of the world where healthcare is nearly non-existent. Like most of the world, I wouldn’t have been born into priveledge, with affordable doctors nearby. I wouldn’t have had wholesome food to eat daily, and may have been exposed to the elements, civil war, and sexual acts of violence against girls. If I had developed the very same condition at 22, I wouldn’t be alive at 35. That version of me wouldn’t exist. I would have died a slow, painful death, like so many others with the same diseases that we in the US call “chronic,” and manage day to day, other parts of the world calls them “terminal”. 

The door slides again. I step back through the wormhole. 
I’m here in my life. In my own body. In my own bed. In my own reality. There is no other fate than mine. There is no other Mary.

This was a challenging, yet powerful exercise- but it did hurt. There were others I didn’t write about here. In the end, it was a success, I did shake off that alternate dimension feeling. 

This is the life that was set aside for me. In all of the realities I could imagine, this is the only one where I’ve been molded, strengthened, and shaped to conquer my specific challenges. I am the person whose eyes are prepared to see unique beauty only I might see. I’ll leave only one set of footprints behind when I’m gone. 

There is no wormhole I’ll ever slip into. No sliding door waiting for me to step through and merge into my rightful life. 

I’m not entitled to any other existence. 

This is my one and only life, with all of its shortcomings, pains, privileges, hopes, and unknown future. 

It’s not over yet.

Emoticon Withdrawal

I got a new working phone yesterday for my birthday! Woot woot!
I’m still playing around with it, but I have to say that it’s kind of stingy on the emoticons.

You don’t realize how far down the emoticon rabbit hole you’ve gone until all of those little faces are suddenly ripped from your life like a big yellow blur. (Insert sad face here)

Goodbye winky face: you helped me keep my foot out of my mouth so, so, so many times. (insert yikes face here) Now, I’ll have to rely on the ‘LOL’ to save me from myself.

Farewell Tear face: How will anyone know I’m sad? Words just don’t do what one little tear face can.

Mr. Smiley Face, I will miss you the most. Your good old classic “I’m smiling” demeanor may be overused, may at times be the inappropriate emoticon for people to utilize and get on my nerves (rolling eyes face), but you never get old. Keep on smiling, Mr. Smiley!

(Insert 2 laughing faces, winky, and blowing kiss face)

Yep, I would have nailed those emoticons (thumbs up symbol to myself).

Choosing Myself: One Year After Separation

autumn chrysanthemum by Natalia Drepina

One year ago today, my husband decided he wanted to separate. For months after, I fought for my marriage alone, for the man I loved, and then…after months of silence, I realized I was standing alone with an untied knot in my hands. Everything was torn away from my life. I had to decide whether I would keep going on, or if the pain and loss was too much to bear. I made a decision to continue fighting, but this time, for myself. 

I wrote another post today in which I outlined May 1st of last year, and how the days and months unfolded with everyone’s shock and grief and the unexpected surprises to come which I could never have foreseen. But, I think I’ll save that piece for my journal as today I don’t want to look back thinking only of my ex-husband, and the loss of love. I’ve grieved him, our marriage, and our life together throughout the year. Today, I want to look back over the year and remind myself that I overcame everything I believed was utterly impossible to do alone. I want today to be another choice for myself. Next year, I want to celebrate this day as the beginning of letting go and starting fresh. Typing those words brings a few tears to my eyes, but I want them to be cleansing tears. I don’t know how to be just me without longing and loving and planning for 2 yet, but I will learn, and I have great expectations.

Asperity by Natalia Drepina

The first thing I did when I came to stay with my parents was I made a doctor’s appointment. It’s the most difficult thing I have to do physically; only my ex had ever taken me before- and my doctors helped us avoid making the tremendously painful and exhausting trip by scheduling me months apart. After such an emotional shock, why did I want to go through a physically traumatic experience with an inexperienced caregiver? I guess I just had to prove to myself that I could do something impossible without him! I went out of my way to do as many impossible things as I could find while I was so emotionally fragile. I’ve been to several doctor’s appointments, I’ve had new tests, and I had been afraid of going back to the hospital, but I’ve since been twice this year. My body fighting me on the outside as I pushed it harder and harder seemed to match the feeling of my heart dying on the inside. 

In the autumn hands by Natalia Drepina

My ex-husband was my caregiver for the last 4 years of our relationship. He knew what no one else could: about my condition, about my needs, about my doctors, about my life, about my heart, and he knew everything about my soul… I thought he did. When someone has spent years exploring the very depth of your soul, and can go to such lengths to reject you, no pain matches it. 

 

The loss has been cavernous. I first believed I wouldn’t be able to continue on living without him- practically or theoretically. Not because he supported me physically, but because he was my heart. After mustering the strength to ask my mother and father to help me do several impossible things, I went in search of both a professional caregiver and marriage counselor. That took me a great deal of courage to even allow a stranger to enter this room. I thought, how will I carry on a conversation? What if they can’t be quiet enough for my pain level? What if they don’t know how to touch me and injure me, spreading my condition? But I had to do these impossible things, as well. I had to allow a stranger bathe me, and help me dress, and prepare my meals. It was a point of my very survival to find someone else to help me with my basic needs. It could have been degrading and humiliating, but I was so stubborn in what I needed to allow for myself to live in my new normal, that the physical need mattered far more than my personal dignity.

Sleep my dear, the darkness is here  by Natalia Drepina

Soon after, I began inviting visitors for the first time after coming to my parent’s home. It was terrifying at first. I can’t imagine what that’s like for them to remember me one way, dancing, hiking, laughing, and now, laying in a bed, startled by every sound and speck of light, grimacing in pain. Letting those I adore into my bubble felt impossible at first, but it’s another kind of exposure therapy that’s a lot more fun ! Seeing old friends is like a mirror through their eyes, and it can be tough emotionally, but it’s also exciting, and makes me feel more like the laughing, hiking, dancing me that they remind me I am still. My own mirror sees myself through the eyes of my ex now. Where there were once loving, gentle eyes, I see a look of disappointment and disgust. His eyes have always superseded others for as long as I can remember, but he’s not mine anymore, and I’m not his. I’m God’s, and in His eyes, I’m worthy, I’m valuable, and I’m fulfilling my life’s purpose by living it. 

My closest and oldest friend went through her own very difficult divorce in the year before I went through mine. They say, “God goes before us” and when I think of my sweet friend who has been walking her own hard path, checking in with me, and visiting often, I promise you that is true about the love of God lighting candles ahead of us. I’m grateful to be able to practice showing love to her at a time that I feel so empty of everything inside of me I used to be eager to give away. She has reminded me to keep pushing forward so many days that I felt alone. Having a friend who continues to tell you that you’re still the same person, you’re improving, and was willing to fight for me when I couldn’t fight for myself is more of an angel than just a friend. 

By Natalia Drepina

The short quiet visits I was only tolerating have turned into longer, more enjoyable visits I so look forward to. I started with home physical therapy, which has been an immense help in my progression, and I BELIEVE I’m going to be a functioning human being again- no matter how long it takes. While I do get frustrated with my body, I’m not worried about the time table, only that I make the goal. My parents allowing these people, and often strangers in and out of their home for me has been life-changing. I hate when people say that I’m better off without him, because now I’m able to utilize so many resources to improve, but I understand what they mean. I’m just thankful they are seeing improvement that I still need help seeing for myself. 

Every time I’ve wondered how I would pay a bill, how I could live without something I thought I needed, how I could go on without the people and pets I loved, God has always provided a solution, an answer, or a strength to live without. This consistency has lead me to rely on God coming through and has added to the peace in my spirit and courage to face the impossible with the safety net of the universe. 

Even though I’m not grateful I was forced into it, I’m grateful I was able to manage my own proceedings via electronic communication and courier to/from the lawyer. I had no idea how it would work with my condition, and just the thought of it regularly caused me anxiety. But again, God had the right lawyer in mind for me, who worked as my advocate, familiar with disability, even meeting at my home. I had a Power of Attorney to appear for me twice as my signatory, and my lawyer spoke on my behalf in my absence or with statements from me. Being disabled, you feel marginalized so often as it is. It’s as though you’re disappearing. Because of my condition, my movement, voice, independence, and freedom have been taken from me. I think that’s why it was so very important to me that I didn’t give away my privilege to speak for myself. The decisions, paperwork, and meetings were all so overwhelming, I was cognitively pushed to thinking in critical, complex ways I had not since the brain issues began. As much as the divorce may have damaged parts of my life, the process was a healing experience for my physical progress, and has propelled me forward in many positive aspects. I thought I would break apart as my heart broke more and more, but I’m proud of myself for getting through it, and managing my personal business.

Somnolent Still Life:Entomological Silence by Natalia Drepina

Learning to be proud of myself is new. No one else is going to do that for me. I’m learning to encourage myself. No one else is going to remind me to take it easy and be gentle with myself. Giving to myself is a new concept, but I’m learning to view it as responsible and not selfish. I feel emptied of everything I was, and all I can do while I heal is continue on, pretending I’m a human being. The life I worked for and dreamed of is gone now. The slate is clean and I’m beginning to feel empowered and free to build back a completely different life. Some moments my heart aches, but at other times I’m revitalized thinking of the future of possibilities. 

On the wings of the wind by Natalia Drepina

I started working at 15, graduated at 17, and left my parent’s home to travel the day after HS graduation… Now I’m back. I’m being cared for by my parents, learning to nurture myself, learning to walk again, my parents are making me food each day…it’s quite an irony! For me, this anniversary is truly a rebirth. 

Gear for POTS & Chronic Migraine Pain

Because of my chronic monsters, the upcoming “Miracle Day”(aka wedding) will require some special technology. I’ve been prepping for about a year, and have done some research to quiet my critters. Would you like to see some of the gear I’ve found?

Even though I am still uncertain how my body will react at the wedding and how long all of my issues (see my about page for specifics) will allow me to stay at the ceremony, having this “armor” makes me feel more ready to attempt this ‘impossible’ feat. I know everything will be in the red zone, but my sister is counting on putting eyes on me when she is at the alter. She needs me there, so these little gadgets are going to add minutes to my miracle- and some extra minutes are all we need, baby! A good friend of mine thesickdiva blog said she’s praying my endorphin’s will kick in and I’ll be there for an hour instead. That would be amazing! Thank you, Jenny!

Ear plugs– I have so many different kinds. I usually use the soft foam kind for comfort. PS, these come in many sound-blocking capacities. But for this special occasion, I’ve purchased Decubulz which have the highest NRR available. I have yet to mold and fit them, which will take help, and boiling water, so we’ll see if they work as well as advertised. I’ll let you know how they work out.

Headgear– Bose wireless sound canceling headset has been on my wishlist for a long time. They have been such a blessing since the holidays! (Thank you Aunt Darlene.) I don’t know how I ever lived without them. Before, I was using gunrange type headgear, and they were not only very tight and painful, but they didn’t offer much sound protection. The Bose are the best sound protection available, and much more comfortable resting on my neuropathic head and face. I like that I can wear them as needed, and then I can flip the switch on the side for the sound blocking feature before my head explodes. It helps turn down the pain and some of the fight or flight sensory overload symptoms. I wish it blocked out all sound, but they are a big improvement over any other headset I’ve tried.

Theraspecs Sunglasses– I did a great deal of research on migraine reducing shades before deciding. Many of my friends have prescription eye wear for light sensitivity, but a physically wearing trip to a new doctor plus lights being shone in my eyes for new specs was off the table for myself, though if you are reading this with headache disorders triggered by light, prescription shades is one of the options. I was relieved to find there are many kinds of shades to choose from. My friends said to look into Serengeti shades, sporting eyewear, and rose tinted lenses. I did. I soon found this company, Theraspecs, which was started by a woman whose severe migraines are brought on by light. She and her husband make lenses with several kinds of filters, (including FL41) and will even custom make your shades if you send in your favorite frames (winning!). Since getting mine from Theraspecs, I notice a big difference in screen brightness from my laptop, Kindle and phone. I’ve yet to try them outdoors, but I’ll be giving them a spin in a couple of evenings! My Aunt also got a pair of theraspecs custom made, so we will give you an update on head pain reduction. We were both very impressed with the level of communication from the company, and customer service.

Bride’s Maid Dress– We were told to pick our own dresses (with criteria). I absolutely love the one I found. As you can imagine, I have not purchased any (non-pajama) clothing for a very long time. I’m so excited to wear it! I haven’t worn makeup in quite a while, either and found some fab red lipstick that I hope will accentuate my pale…ehem porcelain complexion. (The sale price is not what I paid.) ASOS is one of my favorite online clothing shops for gifts and “lounge wear.” Here are one of my accessories that I’m excited about wearing as well; it’s both functional and fabulous. If anything else, I will be put-together on the outside! (wink)

Reclining Wheelchair– Such exciting news!!! Even though last week was one of the worst in a long time (that’s saying something folks!), this wheelchair was such an amazing gift to my life! I’m so stoked about this! Thank you for celebrating its arrival with me, and allowing me to share it with you all!!! My reclining wheelchair was not only approved by insurance, it was already delivered! Isn’t she pretty? We usually have to rent one, and now, we have one for keepsies. As I’ve shared here before, my Postural Othostatic Tachycardia Syndrome (POTS) only allows me to sit or stand upright for a couple short minutes before going into Pre-syncope (starting to get sick and pass out). But if I’m in a reclining position, my POTS will stay in check. That is a huge relief! If I am forced to be upright for more than I can tolerate, my health can go into a setback for a while. I know this wheelchair will be an awesome step forward on my journey, and hope it leads to great progression for my life! (If your insurance has not approved your chair, try Invacare on Ebay for new, inexpensive, high quality chairs with free shipping.)

Hopes and Dreams on Wheels

Nurse/ home health aid– I’ve had a home health aid come every week for the last several months (game-changer), and she will be assisting me at the wedding. Because of her help, no one in my family will be distracted by me, and they can focus on my sister and the wonderful event! A great relief to both me and my sister. When I told my sister my aid would bring me to her wedding, I could tell it lifted a weight off of her shoulders. This newer aid has never taken me out of the house, so I admit that I am anxious about that. My ex-husband is really the only person who was fully aware of all of my transport issues and needs when we would attempt to go to doctor’s appointments. I’m putting a lot of trust in her professional ability and experience with other patients. She hasn’t failed me yet!

Blood pressure cuff– This is just my boring reliable old blood pressure cuff from Walgreens. We got it way back in 2011 when my one monster (RSD) invited a whole crew of critters to the party. I don’t sit around measuring my BP for kicks, but we’ll bring it along in the car just in case.

Though I wish I had a temperature controlled, sound-proof bubble I could participate in the wedding through, I can only prepare so much. We’ve been planning for over a year, I’ve been in physical therapy for months, and I have every item to make my body as cooperative as it will get. If I had not gone through all I did this past year, I don’t know if I would be ready for this day. That is a ray of sunshine coming through these clouds because I love my sister more than anything.

Just as my sister is planning all of the details to make the day as beautiful and memorable as possible, I’m planning for a smooth event as well. We can’t approach it with fear. No day is perfect, but how we enter into it mentally can change the memory completely. For me, the truth is that it will be painful and frightening. I will have to recover for a while afterward. If I can go to be present for their vows between 10-20 minutes, that would be so incredible! It will be a triumph and so precious to be there supporting my sister, her soon to be wife and our families.

I’m so honored and privileged to be her maid of honor. It has been a joy to contribute to her wedding in my own ways. I have some little surprises for her and her bride for the day of, which I’m getting excited for. It has been very difficult, sometimes heartbreaking (for both of us) not to be involved like I would be, like I SHOULD be. That river runs deep for us both, but more importantly, so does our relationship. For the ceremony, I don’t know if anything could stop me from being there in any way I could be. She is my heart. Of everything that has gone on in my own life in the last few years, wedding planning has been such a bright light I am so grateful to be included in. See you on the flip side! Thank you for rolling along with me.

The secret to longevity is…don’t vacuum

This was inspired from the blog post: Take my Advice, I’m not Using it written by Mark from TheGadAboutTown.com who is always an inspiration and an encouragement.

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On the Sunday before the wedding, I suggested to my mom that she might want to spend as much of the day as possible resting before such a stressful week, doing so much for everyone. “You are crazy! I can’t rest a full week before the wedding. What good is that going to do me?!” she laughed at me. And I laughed with her.

The differing perspectives reminded me of the quote, “The secret to longevity is getting a chronic disease and taking care of it.” -Oliver Wendell Holmes (who lived to be 93 at a time when men died at 40). At what point do we shift from our bodies listening us, to listening to our bodies?

Yesterday I shared that I was breaking up with my body; that’s actually a feeling I’ve had for a while now. It doesn’t mean I’m not listening to her, it DOES mean she isn’t allowed to bully my spirit any longer. I used to bully her though. I used to push her past her breaking point all the time. Both before and especially after CRPS/RSD set in.

I can be relentless when I am focused on something. Whether it’s a person, my career, a passion, a dream, or a goal, I will drive all of my energy into it or them. In my past life, B.P. (before pain), while at work one day, I was set on vacuuming the floor. Simple. The vacuum belt needed changing first, but the belt I special ordered for the vintage model was just a smidge too small. Too bad. This floor was getting vacuumed today. I put both feet on the vacuum and pulled the rubber belt with all of my strength to make it fit! POP!!!! The metal vacuum brush cylinder sling-shotted me right in my face! The pointed end hit me hard enough to knock me out momentarily, and missed my left eye by a hair. I got 11 stitches, a black swollen eye for a couple weeks, and a cool scar across my eyebrow…from a vacuum attack. (Everyone wore a metaphorical I’m with stupid t-shirt while it healed.)

What does that worthless vacuum have to say? There are limits. We can force it, but there are consequences. This wedding coming up (in 4 days) could set me back with my health for a while. But it’s once in a lifetime, it’s one day, and this is most definitely worth it. Sometimes the benefits outweigh the consequences and risks, and sometimes, it’s just a little extra dust on the floor and it isn’t really worth a scar on your face.

~

Please share a moment you pushed it too far and life or your body reacted harshly. I’d love to hear from you!

A Peace Premonition

Just over one year ago, I wrote a post which I now believe may have been a premonition. On one of the last days of 2015 I wrote No Fear Campaign, 2015 and I have thought back to that post as well as revisited it so many times throughout this past year.

I was fueled with courage at the beginning of the year, but I had no idea why I would need it. And then the bottom dropped out of my life and I REQUIRED that courage more than ever. I suffered so much loss this year, I made a huge transition, fought a difficult battle, saw several new doctors, visited the hospital, started physical therapy, home care, and have been exposing myself to many new faces, new experiences, and could never have imagined any of this just one year ago. It’s true that this year, I’ve been in constant crisis management. But it’s also true that I’ve been managing my own crisis. That might seem like a given, but illness doesn’t always allow us that luxury.

Last year, the messages to be courageous seemed to jump out everywhere: Have no fear, do not fear, I am with you, be not afraid. If God wants you to hear a message, you will see it constantly whether it is on Facebook or Twitter or television or out of your home or in your Bible- if you feel like there is something that keeps popping up in front of you repeatedly, that message is JUST FOR YOU! Truth finds you. You can try to ignore it, but if God wants a message in front of you, He will repeat it and confirm it. It’s not a coincidence. And I am so thankful I grasped the message to have courage when I did. It truly saved my life this year and courage continues to change how I move forward.

Things are so hard now, SO HARD. But I’m planning to beat fear once again, and go to my sister’s wedding… in 7 days. This is possibly one of the scariest things I have ever attempted. And yes, I am afraid. As it comes closer, all of those I CAN’T thoughts are terrifying at times.

Courage in the Fire

These posters were made around the end of last year. Around the same time that I wrote No Fear Campaign, I wrote a few other, fearless-themed posts. In one piece, I said: “The strength comes for the step you need it, not days or months ahead.” That is what I am counting on for this wedding adventure. And it helps give me peace that God will strengthen me and my body to do what needs to be done when the time comes, for my sister, and for me.

Whatever trials wait for you tomorrow, and paralyze your heart with worry today, I hope you feel comforted remembering you can call on that added strength and courage at the moment you need it. You aren’t walking your path alone.

~Peace be with you~

“Freedom lies in being bold.”
― Robert Frost

More like a death than a divorce

Secretly, some days I think if he had died instead, this would all be less complicated. I know you’re cringing. I am going to lose some of you right away for saying that. It’s totally perverse, and I feel so much shame for thinking it, but I have thought it.

It’s like when I hear people with a rare disease say they wish they had cancer instead. CANCER? What?! No one wants cancer. That’s a horrible thing to say, but when doctors, family and society can’t comprehend how severely you are suffering, it is not rare at all for people to say, “At least if I said I had cancer, people would take my suffering seriously.”

When a loved one passes, that memory is in tact. In time, the very best memories rise to the surface. Their imperfections drift away. You cling most to the joy and love you shared, and their best attributes shine. That’s what I want for him. I want his legacy to be in tact, and to be part of my heart… for him not to have broken it.

In a divorce, even if you shared a long, loving and sweet relationship, the breakup and divorce process turns it all sour. I wish there were a way to put 16 years in a time capsule, and then just sweep away the last 9 months.

I want so badly to remember him as he used to be. It’s impossible to look back at the relationship with the love and sweetness it deserves without the ending shading every single moment beforehand. That’s how bitterness blooms.

I don’t want the best years of my life to be erased by a few months of the worst. Many have advised to just let go of it, but you can’t just punch out half of your life. I can’t move from this so quickly. Especially not when it ended so abruptly. It deserves to be felt. I loved him that much that I’m willing to feel it all.

I want to grieve the man I love like the widow grieves her departed. I want to cherish the love we shared like the treasure I believed it to be. I want to bury our marriage so it rests in peace. 

My other secret is that I pray for him. That he is well, and God is taking care of him.