~ Cassandra Clare
~ Cassandra Clare
“I sustain myself with the love of family.” ~ Maya Angelou
Welcome to the fourth and final installment to the series “Tame The Beast.” I am sharing today, someone I couldn’t live without on my journey with chronic migraine, my husband, Rick! Though when he sees his picture on Facebook, I might have to hide for a while, he really hates having his photo taken, and putting it on Facebook even more. Oh well, in this case, he deserves having it there!
I am blessed with a very supportive husband! We’ve been through a lot together, on my journey with chronic migraine. I would even say he has walked along with me on this journey. Imagine if you will, a journey that takes you along a wide winding road. As your walking part of the trip is in the sun, bright and cheerful, no cares in the world, we hold hands happy as can be. Then all of a sudden, a storm breaks over our heads, lightning cracks, thunder roars, a horrible pain overtakes me, all but leaving me on the path. Unable to go on, but Rick will not leave me, together we wait out this awful storm. The wind blows the intense storm away; it’s sunny again, so we begin our journey once again. Before we realize it, we find ourselves walking through, very dark, gloomy, and sorrowful woods.
My spirit feels so very heavy, and a deep sadness overtakes me, I want nothing more than to hide and cry my eyes out. Still, Rick holds my hand, even putting an arm around me, as to protect me, we pass through the forest, into the sun again, and continue walking. Feeling such a relief that the ugliness is behind us. Out in front of us pops a hideous troll, named Crabby, oh how I hate this Crabby Troll! He hits me with his wand, and now I’m Crabby! Now I’m taking little potshots at Rick, but still, he holds my hand. Soon Crabby wears off, and I apologize to Rick; he understands, all is good, and we continue our journey. Now imagine taking this journey, over and over, because that is what it’s like for a person living with chronic migraine.
You’ve probably guessed what most of the imagery stood for. The storm was a migraine attack, which lately has gone back and forth, from chronic to intractable. Causing me to spend more days in my cave than I would like to. During these times, Rick never complains, he just picks up what needs to be done and does it. I’m fortunate that he really enjoys cooking and is excellent at it. I get tickled at him looking, on Pinterest for new recipes. He gets upset with me when I feel guilty for him having to do my chores. He tells me this is not your fault, and they are as much my chores as yours. He’s retired and actually likes to stay busy.
The dark, gloomy, and sorrowful woods, are days when depression and anxiety get the best of me. Even with medication, chronic daily pain takes a toll, and it can be frightening to feel that way. Especially when you feel anxious and fear a panic attack coming on, and I do not want that. It’s these kinds of days that I am more likely to cry at the drop of a hat. Rick understands this and gives me extra hugs, making me feel safe.
Crabby, well, what can I say about crabby? I tend to get irritable, during a migraine attack, or a long migraine cycle. Unfortunately, the same thing that triggers my migraine attacks also triggers a fibromyalgia flare, barometric pressure changes. And can exacerbate neck and lower back pain due to degenerative disc disease, talk about being a hot mess! Poor Rick is the only one around and ends up on the receiving end of my crabbiness. As it often is with families, we take things out on them, that we wouldn’t consider saying or doing to anyone else. I always apologize, and he understands where it is coming from, even if it does make me feel lower than a snake’s belly. He is my rock in every sense of the word. I would be utterly lost without him and am thankful every day for his unconditional love and support.
Without Rick’s support, it would be much harder to fight the beast every day! But he has stuck with me through thick and thin since the chronic migraine started seventeen years ago. Countless hours in the ER until I finally got the right headache specialist. Many trips to Chicago, a six-hour drive one way, when I was seeing a specialist there. Many trips to the hospital, where I go now, thankfully only about forty-five minutes away. And he drives over every day to visit with me. He is my soul mate, my best friend, my rock, and I love him, dearly!
You don’t choose your family. They are God’s gift to you, as you are to them. ~ Desmond Tutu
“The ideal of calm exists in a sitting cat.”
― Jules Renard
Welcome to my third installment, to the series “Tame The Beast”. In this series I am sharing some of the coping mechanisms, that I found to be useful on my journey with chronic migraine.
Calm is an app that can be download to your cell phone, and has some striking differences, compared to other mediation apps I have seen. First it does offer guided mediation, for several different areas in your life. But not just your life, there are guided mediations for children as well.
There are several different pieces of music that you can choose from for self mediation. They use a lot of nature melodies, which I find extremely relaxing. On first opening the app, it starts playing sounds of drifting water, birds calling, insects chirping and the peep of little frogs. When I find myself feeling anxious, I will open the app and just listen to this for a while. Paying attention to my breathing and any tension I may be holding, if I find tension I focus on releasing it. This is where my biofeedback training is so very helpful!
Another wonderful feature of Calm, is their bedtime stories! Yep, that’s right bedtime stories. For adults and children, they are simply amazing! The readers have the perfect seductive, relaxing voices. Get your mind out of the gutter, they are not those kind of stories. That is the best description I could think of, there voices draw you in, making you feel so relaxed, you’d think you had just stepped out of a day spa! The children’s stories are just as amazing, there are some for nap time and others for bedtime.
I absolutely adore Calm, it is well worth the price I paid for it. When I have a migraine attack, I often get anxiety. Having another tool to use to tame the beast is always a good thing, you can never have too many! Being prone to panic attacks, I like to be able to nip them in bud, before they become full-blown. Calm helps me with that, it really is an amazing app, totally different from anything I’ve seen before. I still like Headspace for guided Mindfulness Mediation, and will continue working with that. But Calm is my go to, well, when I need to be Calm, and tame the beast!
“If it comes, let it come. If it goes, it’s ok, let it go. Let things come and go. Stay calm, don’t let anything disturb your peace, and carry on.”
― Germany Kent
Live with hope,
Photo: Credit Storyblocks.com
“Having anxiety and depression is like being scared and tired at the same time. It’s the fear of failure but, no urge to be productive. It’s wanting friends but, hate socializing. It’s wanting to be alone but, not wanting to be lonely. It’s caring about everything then caring about nothing. It’s feeling everything at once then feeling paralyzing numb.” author unknown
As I listened to Dawn Buse, PhD, this week during the World Migraine Summit, I was struck first by her, kindness and caring, for migraine patients who also suffer with depression and anxiety. Her entire being radiated her passion, for what she does, and how very much she cares for her patients. I would love to have her for a therapist! Then as she began to talk about the correlation, of depression and anxiety, between those with migraine. It quite boggled my mind! The stress of chronic daily pain, upon the body and the mind, should really be of no surprise to me. I have clinical depression, as well as, anxiety disorders. Yet the statics, where mind-boggling, more than fifty percent of those with migraine, have with either depression, anxiety disorders or both. In patients with chronic migraine, those numbers go up.
This is her web page for anyone interested, in seeing what she has to offer online, and there is quite a lot!
I have dealt off and on, with depression and anxiety, since my migraines went chronic in 2001. At this time, I lost my job, our best friends moved away, our oldest son moved out on his own, I had a Total Hysterectomy and was diagnosed with fibromyalgia, in the space of six months. It was a very stressful time in my life, I was in constant pain and hadn’t at the time found a headache specialist. So I was being treated by my PCP, his advise for the fibromyaligia was to take hot showers! One can only stay in the shower so long. I felt so hopeless and alone, I had no one to turn to for support. Thoughts of suicide began to enter my mind, to the point that I made a plan. In doing that, it scared me so badly that I called my physicians office, and spoke with the nurse practitioner who was in the office at the time. He was a voice of calm, in the middle of my storm, and set everything up so that I could go directly to our inpatient intake counselor, to admit myself. One of the best things I’ve ever done for myself! I stayed there a week and learned so much, no it wasn’t easy, it is very hard to open yourself up to a complete stranger. Tell them all your fears, sorrows, pain, emotional and physical. But that psychiatrist did more for me, than my PCP had been doing. He treated my emotional, anxiety disorders, as well as my physcial pain. At that time, in the moment, that was what I needed, and he got that. I believe with all my heart, these actions saved my life.
I wish I could say that depression and anxiety, is no longer a part of life, alas I cannot. I have clinical depression, which runs heavily on my mother’s side of the family. So I got the double whammy! My mother also dealt with anxiety disorders, and what nasty little buggers they are. Panic Attacks are the worst, sneaking up on you out of the blue, with a big knot in your belly, you need air, where is the damn door I can’t breathe! I think my heart is going to gallop right out of my chest! Dawn Buse suggested a one minute breathing technique, when you feel a panic attack coming on. Take a deep breath in, then exhale, forcefully, repeat for one minute.
These are diseases and disorders that travel with the beast, we cannot will, wish or pray them away. We can learn coping mechanisms, to make life more bearable with them. Relaxation techniques such as, biofeedback, mindfulness mediation, and therapy. Whether it be talk or Cognitive Behavioral Therapy(CBT), which I will be starting very soon. Living with migraine requires us to do, everything we possibly can, to make life somewhat better. To live it to its fullest and keep hope alive.
“In the dead of night at dawn or in the depression or the emotion of any afternoon, whoever you are, respect your own changes and transitions, it can be painful to know that you do not please everyone, but it is refreshing to realize that you honor yourself.” author unknown
Live with hope,
“Books are a uniquely portable magic.”
― Stephen King
I am super excited to welcome you, to the second installment in my series, “Tame The Beast” This is a subject I could talk about for hours! I hope you enjoy reading it, as much as, I did writing it.
I have been an avid reader for many, many years, way back before chronic migraine became a part of my life. I spent summers reading whole series of novels, Nancy Drew, Hardy Boys, Little House on The Prairie, Dana Girls, the list goes on. When I got a little older my Mom, let me read some of the authors she liked at the time. Victoria Holt, Phyllis Whitney, Mary Higgins Clark, but it wasn’t long before I was branching out on my own, looking and trying on genres, until I found which niche I fit into.
Which turned out to be historical romance(or hysterical romance, according to my hubby)and mystery/thrillers. Which my hubby is sure that I am boning up on how to do away with him! Isn’t that just like a man, can’t be satisfied with either genre. He’s not a reader like I am, he didn’t grow up reading, more of an outdoors kind of person. He likes to read now and then, but when he does it takes him forever to finish a book, because he’s really absorbing every little detail of the book. My son’s are both avid readers, not as much now as they used to be, with work and such. I started reading aloud to them when they were about one month old, and continued this until the were in elementary school. Being strong readers was a real plus for them in just about every subject, during their school careers.
These days I stick with mostly mystery/thrillers, except for the occasion historical romance series that I’ve been following for years. Even then they are not boring, kissy, kissy, content only, but lots of action and adventure. From high sea adventure, pirates, kidnappings, tale of the old west, plenty of suspense and mystery added in. I don’t do boring!
Okay I know what you are thinking, how does this tame the beast? Anyone familiar with the old commercial “Calgon Take Me Away”? That is what reading does for me, it takes me away. Away from the pain, the depression and anxiety that creep in despite medication, the guilt, despair, loneliness, hopelessness, and feeling of loss. No, I don’t have all of these feelings, except the pain, everyday. Thank the Lord, but they do creep in, and I believe that is normal, for those of us who live with chronic migraine and chronic pain. We cannot be UP all the time, we’re only human, DOWN times are going to come. We just need a way to deal with them, so that we are never overwhelmed to the point of giving up. Of losing HOPE!
Reading is a solace, escape, an adventure, a journey, you never know where a novel is going to take you. An underwater adventure perhaps, to a restaurant where the meal described has your mouth-watering. Into a life and death situation, that has you toes curling, until you get to the conclusion. Maybe you journey to India, and you can almost taste and smell, the spices so popular there, cloves, cardamom, cumin, coriander, and nutmeg. Be there during The Festive Of Colors, when gorgeous vivid dry colors are tossed in the air to land on everything and everyone. All of this you see through your mind’s eye, experience through reading. It is magic! For the time I am able to read, it takes me away from the pain and transports me to another time and place.
Yes, there are times that I am unable to read, when the pain level is too high. Most of the time if I am at an eight or below, I can read. But you must remember, everyone’s tolerance is different. My baseline pain level is between a three to a four, you have to decide what is comfortable for you. Reading with my Kindle Fire, makes a lot of difference. It has several features that makes it easier to read on, while having a migraine. As with the Paperwhite Kindle, you can change you text size, as well as font, and brightness. With the Kindle Fire you can also change the color of the page, white, black, sepia, and green. I use the sepia, it is a creamy taupe color and much easier on my eyes. If that gets to be too bright, I can turn on the blue shade, making it even more comfortable to the eye. When you are in migraine mode, comfortable is the key word! If you love to read, but can’t do so during a migraine the traditional way, with a good ole book in hand. Think about investing in a Kindle Paperwhite or a Kindle Fire, the prices are virtually the same and if you are upgrading from a Paperwhite to a Fire, all of your books will transfer. Since they are stored in the cloud. Here’s to happy reading and taming the beast!
“You can never get a cup of tea large enough or a book long enough to suit me.”
― C.S. Lewis
Live with hope,
“Aromatherapy is a caring, hands-on therapy which seeks to induce relaxation, to increase energy, to reduce the effects of stress and to restore lost balance to mind, body and soul.” Robert Tisserand
Welcome to the first installment, of the series I am calling “Tame The Beast”! Simple things that I do to cope with chronic migraine. I have no rabbit to pull out of a hat, not at all, just little things, that I have learned over an eighteen year period. So buckle up, here we go!
I have been experimenting with essential oils, in a diffuser. I did an experimental run, a couple of years ago, trying different essential oils, mixed with a carrier oil, such as fractionated coconut oil. None of the standard oils, normally known to help migraine, such as peppermint oil, clicked for me. I was very lucky to have a family member who sells doTerra, and she provided me with samples to try out.
I did like doTerra’s Deep Blue rub, the smell can be a tad strong, but I am using it primarily on my back, neck and shoulders. Once rubbed in it is covered up with a shirt, or nightshirt, blocking out the smell. It works very well for my fibromyalgia pain.
Back to the diffuser, I have always loved Lavender for its natural relaxing, soothing, sleep aid properties. I will use it during a migraine attack, to help me relax more fully. This helps in aiding my medications to work more effectively. One of my migraine sister’s uses, Lavender oil along with Epsom salts, for soaking in the bathtub. Helping her fibromyalgia when it flares up, sadly I haven’t been able to try this, any perfumed additive to bath water, causes me to get a vaginal yeast infection. So I’m a shower gal. I also like to use Tides Lavender infused detergent, Downy’s Lavender infused fabric softener and Unstoppable Lavender scented products, to wash my bed linens in. They smell so nice when I put them on the bed! When I was researching more about Lavender, I read of Mothers who made their own “Sleepy Cream” with essential oil, that they rubbed on their children at night. The children liked the scent, and the Mothers swore by its properties, to help their children get a more restful sleep. So it’s not just for grown ups.
Eucalyptus is known for its stress relieving and overall good health benefits. Excellent to use when you have a head cold or sinus infection. Eucalyptus works as an expectorant and helps cleanse your body of toxins and harmful microorganisms that can make you feel sick. One of the most effective ways to utilize eucalyptus for colds is to drop several drops of the essential oil into your diffuser before going to sleep so you can take advantage of the healing benefits all night long. As an air cleaner, try putting a few drops into your vacuum and clothes dryer filters to freshen them up and sanitize them. Also, it’s great for killing mold in your home, and you can mix eucalyptus with other oils like clove and tea tree oil to cleanse the air and maintain a mold-free home. Who knew Eucalyptus could do so much! I love its lovely clean smell.
Peppermint, well peppermint is beloved by many with migraine, not only as a tea to help with nausea, but also applied topically, after being mixed with a carrier oil. To your temples, behind your ears, back of the neck, and even the sinus area of your face. Taking care that your mixture, isn’t too strong, the flumes can burn the eyes. Peppermint oil works well in the diffuser also, during a migraine attack. But it is not my favorite, nor was it one of my husbands! Peppermint tea on the other hand is. I keep a stock of Twining’s Peppermint Tea, K-Cups for my Keurig at all times, and drink it with raw, unfiltered honey.
Never use pure essential oils directly on your skin, this can cause burns, they need to be mixed with a carrier oil first, such as fractionated coconut oil. Another very important thing to remember, if you have pets, be very careful where you use your diffuser, some essential oils are toxic to animals. I use mine on my bedside table, a place Belle does not get on, I don’t think her highness will fit. lol Belle also has a very sensitive nose, just like her Mommy, and shy’s away from smells like these. But this is not the same for all cats or dogs, being curious they want a closer look. Even using a diffuser in the same room, as your pets for an extend time, can cause them harm.
I bought my diffuser and essential oils from Amazon, there are many types of diffusers, at a variety of prices. When it comes to the essential oils, you are better off, paying a little more, and getting a higher grade oil, that you will need less of, in the end you save money. What woman alive doesn’t like a bargain or to save money? One thing you must keep in mind, migraine is not a cookie cutter disease, that said, aromatherapy is not for everyone. One essential oil scent may be wonderful for me, but for another person with migraine, send them into a migraine attack. Scents are very personal, experiment with them, you may find one you like and is beneficial for you. Or you may not be able to tolerate any scent all. Diffusers with just plain water are still good for you, year round. Putting moisture back into the air, if you take medication, that dries your mouth out, they also make your eyes, skin, and lips dry. Moisture from a diffuser is awesome for helping in these areas.
The diffuser has a breathing exercise mode, when I made this video, the light moves like a shadow, as if there is a ghost inside it. I assure there is not, it only did that during the video process. Otherwise that would be very annoying and not relaxing at all. I added some background music, to make it more interesting. What’s a video without music? I’ve really had the most fun putting this blog together, trying out the different essential oils, and getting to share it with all of you! That’s really the best part, sharing! I hope you’ve found it informational and fun at the same time.
“Healing begins with an aromatic bath and daily massage” Hippocrates (c. 400 BC ~ c. 370 BC)
Live with hope,
The other day on Twitter, I came across a tweet from a young lady who was, clearly upset that she was unable to have anyone hug her, because it caused her pain. She has Fibromyalgia, as I do also, it is one of my comorbidities along with chronic migraine. She stated that she came from a very huggy family and desperately missed that connection with them. That really got me thinking about my own experience with fibromyalgia and how it has impacted my life.
I’m going to be quite frank and open on this subject, I feel that there are a lot of people who can relate to this topic, or have had the same experiences, but have felt uncomfortable talking about them. During a flare, which always comes with a migraine attack for me, every muscle in my body hurts. Not one is exempt from pain, including my breasts. I’ve had chest wall pain, that I thought was chest pain, and being home alone I had to call 911. After having a stress test, that was normal, the cardiologist diagnosed it as chest wall pain due to my history of fibromyalgia. In cases like this it is always, better to be safe and have it checked out, than to ignore it, and miss a serious problem. I’ve had flares so painful, that I could hardly move without wanting to cry from the pain. Even when I’m not in a flare, I still hurt, just not as badly.
I was diagnosed with fibromyalgia eighteen years ago, in the beginning it was really, really, rough. Sleep was almost impossible, I was given Cymbalta which didn’t help, then Lyrica that I had a horrible reaction to, and finally Savalla which caused my blood pressure to bottom out, making me to pass out. These days I use Tizanidine, a muscle relaxer, to help with the pain, and take a sleep aid so I’m able to sleep at night. Even with that I still have nights that pain, migraine and fibromyalgia, keep me awake.
If you could just image with me for moment, all your muscles are burning, it feels like the nerve ending are too close to the top of your skin, you move the wrong way and pain shoots outs, you get leg cramps at night, certain fabrics against your skin are irritating, you have overwhelming chronic fatigue, you don’t dare do too much in one day, doing so could cause a flare. Then there is the worst part, at times simply being touched causes pain. Being hugged by your husband and children causes pain. Having sex with your husband causes extreme pain, so you are forced to give that up. Love hurts! You find yourself feeling more isolated than ever, and you deeply miss the physical contact.
Not a very pretty picture, but neither is fibromyalgia. Not everyone may have pain at this level, and many people are able to use Lyrica, or medications like it, to control their symptoms and that’s fabulous! I wanted others with fibromyalgia, to know that I understand, care about you, and to let you know, you are not alone! There is always hope in any situation. I am blessed with a caring and supportive husband of thirty-five years, we’ve been through a lot together. We love each other very much and not making love isn’t going to change that. There is so much more to a marriage than sex, though the younger audience would probably disagree. lol Never give up or lose hope!
“Pain nourishes courage. You can’t be brave if you’ve only had wonderful things happen to you.”
Mary Tyler Moore
Live with hope,
“When a resolute young fellow steps up to the great bully, the world, and takes him boldly by the beard, he is often surprised to find it comes off in his hand, and that it was only tied on to scare away the timid adventurers.”
Ralph Waldo Emerson
A central theme that I have come across, is the fear of when the next big migraine attack might occur. While I can certainly understand this fear, one simply can’t live their life, being in fear all the time. It will drag you into a deep dark place, leaving your emotions swirling, whirling, and causing you unneeded worry. If you let fear take over your life, you will not be able to enjoy, any of your migraine or pain-free days. Your brain is too busy, worrying about your next big migraine attack.
Fear and worry become habits, and as such, we have to learn to break them. This is not always so easy to do. Often there are under lying issues, that cause us to have such fear and worry. In these cases, it is really in the best interest of the patient to see a professional for counseling. And get the root, of any emotional or mental health reason, living with migraine and chronic pain, is rough! Making sure our pathway is as clear as it can be, makes our journey easier. That means using every tool we have at our disposal, I’ve said this before and I’ll say again, there is no shame at all, in seeking help for mental health conditions. I’m so thankful, that I listened to the advice of a trusted friend, and sought help for my depression, over two years ago! I hate to think where I might be, if I hadn’t done that!
As the quote states above, when we face our bully and make him visible for who he really is, that bully doesn’t hold as much power over us as we thought. We are the ones, who determine how much control, migraine has over us. Each persons migraine condition is different, and holds different challenges. With that in mind, live the best life you can despite migraine and chronic pain. Don’t let fear steal away your good and pain-free days! Live life, day by day. Keep your migraine tool box loaded and ready to use! Do not isolate yourself, from your fellow migraine tribe. Find a good online support group, so much encouragement, inspiration, and strength can be found there! Never lose HOPE!
“You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You must do the thing which you think you cannot do.”
Live with hope,
Imagine credit: Purchased from http://www.storyblocks
“Dare to live the life you have dreamed for yourself. Go forward and make your dreams come true.”
― Ralph Waldo Emerson
Dreams, we all them. But no one person, dreams for exactly the same thing. As a young girl, many of us dreamed, of the handsome man we would someday meet, fall in love and get married. Or maybe we had loftier dreams, being doctor, lawyer, astronaut, or even president. But none of us, dreamed that migraine and chronic pain, would be a part of our lives. That every step we took, migraine was right beside us, how it could have the power, to change our dreams. Until we took that power back, by learning all we could about migraine. Finding the right doctor to partner with, to form a treatment plan, that would put migraine back in its place.
Sounds too simple, you say? You’re right, it takes hard work and dedication. Finding the preventative medication, that will work for you. Doing an elimination diet, to find any food triggers. Making lifestyle changes, adding relaxation techniques, biofeedback or mindfulness meditation, and sticking with it. This is what you must do, if you dare to live the life you dreamed of for yourself!
Go forward and make your dreams come true! I have seen this happen, within my circle of migraine sisters. Remember dreams are different for everyone. Two swan with dolphins, one returned to college and received her Masters in Nursing, another took an extend road trip with her husband, still another took two road trips with her boyfriend, something she thought, she would never be able to do, one is very active in a organization called ZimKids, and yet another as returned to college to work on getting her Master degree, and lastly one is very active in a foundation for young women. Starting this blog, was a dream come to true for me.
Your journey with migraine, doesn’t have to keep you from your dreams. You’re in the driver’s seat, make the most of it. Yes, there is going to be rough times and rocky roads, but know that you have the strength and hope, to get through them. Most importantly, you are never ALONE!
“The future belongs to those who believe in the beauty of their dreams.”
― Eleanor Roosevelt
Live with hope,
Credit: Images purchased from Storyblock.com
“Whatever you are physically…male or female, strong or weak, ill or healthy–all those things matter less than what your heart contains. If you have the soul of a warrior, you are a warrior. All those other things, they are the glass that contains the lamp, but you are the light inside.”
― Cassandra Clare
My dear Mom, was my warrior mentor! Born with the genetic markers of Polycystic Kidney Disease, passed to her from her Father. Which is how this disease works, it can only be passed, from parent to child. It lies dormant in the body, until your mid 20’s, when the cysts can then be seen by ultrasound. At this point you know that you have PKD, but there isn’t anything that can be done about it. Other than, do your best to be very careful of what you put in your body, and the effect it could have on your kidneys. The kidneys are the clean up crew for what passes through your body. By making sure what you are eating, drinking, being careful of medications, including OTC, are kidney friendly items. The kidneys get a fighting chance of having more time. There is no cure.
My grandfather passed away at the age of fifty-four from this disease. There were no dialysis machines, no transplant options then. My Mom was ten when he passed, so she remembered quite a bit of what her Father went through. The ugly and ignorant things, said to her Father because he couldn’t work, so her Mother did. He was called fat and lazy, by people who had no idea there was a reason for his weight. Upon his death, his kidneys weighted ten pounds each, from the cysts, that sent him into kidney failure, and caused his death. PKD can cause cysts in other organs in your body, including your brain.
Mom knew what she was going to face, but she lived life to its fullest, had five children, Lord help her! Made our house a home, no matter where we lived. I can still remember coming home from school everyday, and just feeling safe and content. Sometimes Mom would be in the kitchen and we would have tea and cinnamon toast. We didn’t have a fancy home, far from it, but where Mom was it was a happy place for me.
Mom loved becoming a Grandma, when Nathan was born she was over the moon happy! Then Brandon came along, soon my sister had a son, then my brother added two more grandsons to mix. Mom couldn’t have been more happy. Her second love was cats, which she had loved since she was a girl, you might have noticed the small cat pin on her blouse in her picture! I’ve also seen pictures, of Mom, as a young girl, her cat with a baby bonnet, inside a baby carriage! Mom often fostered kittens for our local Animal Shelter. Her favorite flower was Lilac, we had a Lilac bush in our yard, one day when mowing the yard, Dad mowed it down! Oh my, I thought she might do him bodily harm!! He was in the dog house for a long time after that.
As Mom reached her late forty’s, early fifty’s her kidney functions started to decline, and her Nephrologist told her it was time to start dialysis. First she had to have a shunt placed in her arm, to accommodate the dialysis needles. This was done by a Vascular Surgeon, and then she was off to dialysis three times a week. This is a lengthy process, as you are basically having all of your blood removed, cycled through the dialysis machine, where all the impurities are removed, and then returned back into your body. It was here that Mom ran into her first glitch. Her shunt kept clotting off, making it impossible to use, so she had to be scheduled for surgery, with the Vascular team, to clean out the shunt so she could continue with dialysis. Problem was the shunt kept clotting off, after this happened for about the fifth time. They decided to run some special blood tests, and found that Mom had heparin antibodies. The heparin they were using in the dialysis clinic, to keep her shunt from clotting, was actually having the opposite effect. Through all of this, Mom kept soldiering on, she kept fighting and she didn’t lose hope that sometime very soon, there would be a kidney for her. And all of this pain, hardship, sickness, feeling so weak she didn’t hardly have the strength, to walk from one room to the next, all of this would be worth it, when she got a kidney.
They were getting ready to set Mom up for peritoneal dialysis, which you do at home and is fairly complicated. When she got the CALL, they had a kidney for her! Finally, everything she had hoped for was coming true. A new kidney, no more dialysis, the kind of freedom she had been dreaming of, fighting for! Being a warrior had led her down the right path.
It will be eleven years, this June that Mom passed. She continued to live life to its fullest, while she could. She was a warrior, fighting each new challenge that was thrown in her path. My Mom was a kind and gentle soul, she would never knowingly hurt another person. During the last four to five years of her life, she faced many medical challenges, that were for lack of better word, pure hell. For many of them she was unconscious, due to the nature of the medical condition. Or she would be scared and confused, these were the hardest, the time when roles are reversed. But somehow, someway, she battled her way back, until her body simply gave out. I believe she was a warrior right up until she took her last breath, we don’t know what she was thinking or feeling. But Mom was never a quitter, her warriors heart beat stronger within her, until it was time for her to go. I hope that I have made my Mom proud, and that I’ll be at least half the warrior she was.
“There are three qualities that every individual must have to achieve success: a Monk’s patience, a Warrior’s courage, a Child’s imagination.”
― Sharad Vivek Sagar
Live with hope,
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