Still experiencing extreme hair loss. Arrgh!

Hair began to rapidly shed around six or so months after 2014 health crisis. That December, prior to 2015, I abruptly shaved my head - completely bald.

It was almost comically showing up at my 4:45 am brightly lit dialysis center with absolutely no hair. The stunned look on everyone's faces... I should have gotten permission to YouTube the moment. Of course no one wants to be offensive or stare. Yet I welcomed any dialogue or inquisitive questions. There were a few compliments regarding how attractive I still looked with no hair. I didn't/don't care too much about physical aesthetics. I've drastically shaved my head like this before - 2000, after my first daughter's death. Grief was too overwhelming to keep my long, thick, healthy locks then. And now they are gone because of illness in body not in heart.

Being a licensed hairstylist makes this loss frustrating. During my tenure as a successful, self-employed hairstylist, I had a reputation of restoring or rejuvenating hair to a natural, luxurious beauty. As usual, the benefits of who I am as a person typically better serves others, which is the story of my life. I'm okay with this phenomenon.

My nephrologist prescribed vitamins for the hair loss. It stopped the rapidness of the shedding, even though my hair length now is under two inches, I can still feel the wiry shedding left in my hands occasionally when I shampoo. *Sometimes this makes me what to shave it all off again.

As a precautionary measure, I use coconut oil on my hair (and my body) immediately following shampooing or bathing. Dialysis patients tend to have regular issues with dry, chafed skin "probably" due to fluid restrictions and the overall nature of kidney disease.

Honestly, the health (sometimes the thickness & length) of my hair is one of the qualities of the loss of health I kinda miss most. Being a hair artist and a creative person, my hair use to give me something extra to do creatively. Like I tell my kids (whose hair I tend to transform in its natural state frequently), our hair is like "magic hair". People want to touch it because it is unique and amazing, a quality to adorn, to be proud of. So like me, their mommy, they see the gift in be different. I guess without my hair now, there are other things that make me stand out (aside from previous female baldness), even though I'm not trying. Usually, I'd rather just simply fit in. Seems easier that way.

Good News! Test, labs came back normal. Thankful.

Had a precautionary D&C after some alarming post-menopausal bleeding. Last menstrual cycle December 2013. Initially sad, anguished at the seemingly abrupt finality of my cherished conception days (maternal. I longed to have more children. Enjoyed being pregnant/nursing & now rearing), nonetheless, I was slowly but surely becoming accustomed to life without pads or tampons. In my late forties and already dealing with situations commonly seen in the elderly -- usually I'm the youngest one in medical waiting rooms for the type of specialist I'm required to see. Following hospitalization(s), during doctor's appointments I was moving about slowly (with my husband's assistance) on my walker or being wheeled in on my wheelchair alongside the other aged patients. *Grateful those days of frustrating dependence are fewer and far between. So thankful to be gaining better mobility and longer lasting strength. *My kids were/are raised hearing me say, "whine & complain less & be thankful for the quality of your health more". Remembering back, once I became cognizant, the reality of my circumstances were troubling. Therapy. Dialysis. Renal Diet. Fluid Restriction. No more contact sports. Exhaustion from poor/non-functioning kidneys. Can't control or fix the situation. Have to rely on others. Disfigurements (AV fistula/Hemodialysis catheter). Aneurysm on my aorta (monitored). Medical cost & bills. Altered lifestyle. Test after test. Surgery after surgery. Pain, discomforts, anxiety/fears with each. Currently I'm un-phased by it all, majority of the time.

I use my son's old baby food jar (from the late 90's; yes, I still have them) to monitor my liquids. Fearful to go over limit, I drink only to take medications now. Hold back from water fountain at the gym. Slowly suck on water iced cubs (limit four) throughout the day.

When out, I take sips from my husband's beverage. Or I plan ahead by not having any other liquids for the day. This is an experiment. I just hope this possibly ridiculously rigorous idea works. 

It's the end of the weekend. I'm hot. I'm uncomfortable. I'm thirsty. Too afraid, too cautious to consume any more liquids. *Need to invest in a home scale to better monitor any fluid gain.

Hubby and I were fortunate enough to finally be able to go on a spontaneous date night. Thankfully our eighteen year old son is home to supervise our eleven year old daughter.

Went to Black Angus for dinner. I had rib eye steak and salad. Ate half and boxed the rest. Sipped on my husbands Arnold Palmer, divulged in the pleasure of a swallow or two of an adult fruity beverage; and didn't drink any of my requested water w/ lemon.

Regardless of my mindful regulations, I'm still panicked to drink anything today (even these two ice cubes) as my regular weekly (Monday, Wednesday, Friday) resumes tomorrow. I don't want to risk showing up too heavy after the required before/after dialysis weighing.

After dinner we went to a movie, saw The Gift, staring Jason Bateman (quality actor to watch on screen) and Rebecca Hall (cute haircut I was fantasizing throughout about - wondering how would it look on certain people). *There was this female adjacent to me with  one of those huge, cold, pricey movie drinks (I could hear the clashing of the ice) which I secretly craved. Being a frugal person, the enormous cost prevented me from asking my husband for one. Cost, size disciplined me for sure.

The Gift reminds me of the psychological and physical power a bully or mean spirited person has over their target/victim. The long lasting damage negative actions does on the victim. The journey of both parties being [wounded people] through denial, remorse, anger vengeance, forgiveness.

Once the movie was over, I noticed the longer lines, the diverse crowds, police presence over the movie, Straight Outta Compton (starting at 11:15pm). Of course this energy provoked more curiosity in me, so I asked my husband if it was okay if we stayed later to experience it.

We joined the line of mostly young people. While there, I stood nerdily awkward, [holding the yellow basket I keep all my fun activities and necessities in; wearing my peacock blue knitted triangle shawl around my shoulders] knitting a burgundy Ascot hat in the round to pass the time.

This movie was probably better than most expected. I enjoyed the quality of the actors {a former inspiring thespian myself}, the pacing of the film and the throwback beats - old-school rap, favorite. Being a native of Compton myself, a peer (age wise) of the characters depicted in film, growing up in the era of the infancy of such sounds, I could remember most of the locations and situations depicted.

It was so cool having modern times gadgets while in a movie theater. Not only did I have in my basket a yarn project, I had my tablet (Samsung) and my cellular ( Iphone). During our date, I periodically texted my son inquiring how everything was going. My daughter has a very strong, determined personality; while my son, more laid back and chill, yet assertive.

I felt young, rejuvenated arriving home in the 2 a.m. darkness & stillness of the night. Certainly we must cease every opportunity with our son being home to supervise (aside from once or twice, we have never allowed [risked] anyone to watch our kids, not even relatives). This way they'll have their time, being close despite age difference. And we'll have some much needed and earned adult time.

Time races while at one of my frequented yarn socials. Ladies from various ages and backgrounds (including my crocheting husband and knitting/crocheting daughter) get together and just create things for themselves, their family & friends, for their preferred charities.

At the onset of the health crisis, I forgot how to do many things - knit/crochet to name a couple. With great determination I have managed to regain the skill I lost coupled with minor improvements.

My son is a proficient knitter and crocheter as well. For years I have suggested that he start a yarn social on his college campus. He said he'll consider it down the line once he has less commitments.

My daughter recently started a yarn social of her own. Yarn-Crafty Youngsters (website coming soon/email: ycraftyyoungsters@gmail.com) it's called. Once she accumulates enough young participants - boys & girls ages 10 and up, she'll have her first gathering - exclusively for youth (parent or guardian must be present). It won't be a class but I hope some will instinctively teach many. All will bring their own yarn & tools, along with a positive, peaceful & productive attitude.

I also had the idea to create warm charitable items for dialysis patients such as: fistula sleeves, cowls, socks and lap covers. Once I work out the logistics, we'll be up and running.

Proudly I've completed a few average sized items within the past few months - about three shawls, a bold orange colored poncho, and cell phone cases. Cleverly, I've managed to knit/crochet/loom while on dialysis. I was told from some this would be impossible. Persistent, I inquired further, along with Internet research. And from my findings, became more brazen in my approach to figuring out a way to do the I was told, impossible.

While hooked up to my dialysis chair, I dabble in a multitude of things ~ I sleep (my dialysis time starts at 4:45 am), I talk to my husband (who except for a few occasions has been right there by my side for the whole three hour treatments), I read (library books, magazines, news from my phone or tablet), I draw and color (I love pencils, pens, crayons, markers; coloring books), I play games (on my table or with my husband. Lately I have been learning how to play chess -- plan to surprise my skilled chess playing daughter, who has wanted to teach me for years),

I blog (ideas/topics come up often and when they do, immediately I HAVE to purge into written word), I eat (working out has me famished sometimes. This hunger carries on until the next day, so I eat), I listen to music (my music interest are varied in taste. I mostly love classical, funk, classic rock, 70's/80's R&B, jazz, psychedelic rock & swing). I people watch (I wonder what is everyone story. I get inspired or discouraged by what I see. I don't want to look or act sick), I knit/crochet (big, broad, colorful items to bring life to such a depressing place). These are all the things I can think of off the top of my head. Sometimes I do nothing, yet have lugged an assortment of items to my chair, to my husband's disdain. I make the best of my time by keeping myself entertained from start to finish. Three hours usually goes by pretty fast.

Hopefully by the time I'm fortunate a new kidney, I'll be bi or multilingual. I love to meet and socialize with all kinds of people. Shy now but painfully shy throughout childhood, my curious and gregarious nature immerses into the courage to approach absolutely anyone. I'm more bold and unfiltered since the stroke though. Oftentimes I get frustrated with myself when I can't speak or understand due to language barriers/comprehension issues resulting from stroke (frontal lobe). Nonetheless, joyously I make friends everywhere I go.

Uh oh! My son has met someone of interest - a female. Thankfully he felt safe to share small details about this girl with his dad and I. So much about who he is reflects how we consciously raised him.

He tells me that I'm behaving like I'm jealous (of the girl I haven't met yet). My questions, my demeanor. I don't know now. Maybe he is right, being the perceptive guy he is (much like his mom).

What a young man. A man! is what me, his mommy must remember. I noticed on this stay home (from college) he is a bit more distant. Naturally distancing himself even more from the nest, from mommies bosom (figuratively) with each visit.

I think I'm having the hardest time with this natural progression. While my husband is his usual calm and mellow self,  I'm scared. Of what? I don't know. I just want to keep mothering and cuddling and doting on him. I don't want some other woman to take my hard "earned" place in his heart or in his brilliant mind. I want to stay #1 and when "she" or whomever comes around, I want them to know his mom's place in his life. {pout}

I know. I sound (and feel) immature and possessive. No worries, my husband will know this exact feeling when our daughter finds her "him". Mind you, she already does what she wants.

Seems like yesterday we brought our son home for the first time. "Eighteen years ago". Wow, time flies and this is why, I'm so glad we made the child rearing choices we did.

Eyes stay puffy and tired looking. Skin - dry. Hair - wiry. Unsightly scars from surgeries and procedures; unstable walk, choppy cadence. [Challenged memory & comprehension] .... I've never been prudish or sensitive about my looks, but who I am externally and internally has drastically changed so much, even I don't immediately recognize myself.

... loose and flabby skin from lengthy hospitalizations. Weakened body from inactivity and damaged kidney. Though grateful for my life, I detest the physical changes that I could not control.

Wouldn't it be great if one can have the wisdom gained from life experience while simultaneously maintaining the body and face of one's youth? Being a former fitness instructor & beauty pageant contestant, I can't help but miss the advantages of being and looking extremely fit.

Rather than complain, I'll do what I can to make the improvements necessary for my insides and outsides. What's important is that I'm consciously aware of the transformations needed.

"I began to question my own intelligence when you got sick", my son shared with me. Honestly, I began to question "my" intelligence when I got sick as well.

Immediately cramming in knowledge when my health changed, he and his dad devoured information when rare ounces of time permitted. Both seeing the [signs and symptoms] along their personal enlightenment to this disease. In hindsight, perhaps we all may have made other choices, if given the chance for a do over - go back in time.

Once that very brief conversation was had, I quickly retreat to my blog to write.  I want to recall all the signs and symptoms I had, but ignored. Life saving warnings of what was to come in my future had I chose to continue hiding in my self-induced ignorance.

to be continued...

My sweet and cute preteen daughter has... been in rare form ALL day. Days like these I remind my frustrated self that she's becoming a woman. Her menstrual cycle is nearly here. But then again, this has been my reasoning since the child was TWO!

I'm at my wits end on days like this, which are fewer and far between. Her personality remains as it was when she came into the world - in utero honestly --- fearless, aggressive and confident. One might wonder how can you tell these traits in an infant. And I say to you, "I have it on videotape".

Not being a parent who wants to alter (but cultivate) who her child is, I have had the wisdom (tried to at least and still trying) to guide but not destroy what's natural, and to some degree, beautiful depending on how you  perceive it. Fearlessness, aggressiveness and confidence are all useful and admiral traits that many aspire to acquire in order to navigate through life successfully.

She has always demanded (in her way) to be right underneath me. The kids are close to their dad, but she is extra attached/glued to me. Even when she was born, she'd scream and cut her eyes at me whenever I'd put her in the warmer or turn my back to rest - always demanding her moms attention as if to say, "I'm here!". And constantly I'm in some way saying, "mommy sees you darling".

Not wanting to be controlled by an infant, I'd protest, I'd resist until... she'd win. Having lost a child, a daughter several years prior made me even more bonded [as if I could be closer] and very vigilant, mother lion-ish. All three of our kids were nursed until they naturally weaned themselves and by the time she, the youngest arrived I dared some one to disrespectfully judge MY choices for MY child.

Eventually I learned I was what is defined as an  Attachment Parent. I can remember how thrilled and shocked I was to discover there was a name describing a major portion of my parenting style and philosophy (for me). Also, I naively assumed every parent were giving their toddler the freedom to read, to explore, to inquire. Our son started reading (well) by age two. By three he comprehended basic arithmetic - addition/subtraction, eventually on to multiplication/division by four.

I have photos of him at the chalk board, exploring the computer; on video reading chapter books. This was our first born, our son, of course. We had no idea what we were doing. Had no comments on what other parents should be doing. All we had was determination and discernment to do better than what we had, minus any ineffective whining or excuses.

Then my first daughter came, healthy yet unexpectedly and suddenly she died (in my arms... at my breast). No one knows what their tomorrow will be.  Journeying through this paralyzing loss, much like a highly focused, wounded pit bull, I became even more hyper-vigilant over my son who is now 18 (who acquired several college degrees already). Totally hands on mom, mind you. I stopped working (was a very successful self-employed hairstylist fortunate to operate in an established, exclusive salon; skilled in ALL hair types) soon after the devastation no parent is prepared to endure.

For a long time I had no idea I was homeschooling until it was time to send my son (first born) to school. Each year, I was like, "I'm not ready to let him go". So we kept him home another year then another. Down the line we realized there was a thing called homeschooling and we had been doing a form of it all along. Content with our choices and the results, we kept going. Made it work through parental bereavement (child loss),  financial challenges (unexpected one income), chronic illness (daily migraines) and now health crisis (Renal Failure/Stoke/Dialysis).

I digress, didn't intend to write all this - totally rambling away from subject (which happens since the stroke), my daughter, the youngest and the baby. Everything is connected, as the topics in this post.

Well, what gives me hope with my daughter is my son's recent apologies to his dad and I. He stressed us big time and I soon forgot how I wanted to rip his head off (figuratively). He wasn't a bad or an awful kid. Never bullied or mean spirited to anyone. Just a complicated type of human that we had to figure out. Couldn't parent him as if he were average. And that puzzle had numerous pieces that my husband and I did the work through lovingly (but firmly), patiently piece by piece - alone. Our struggle was ours like all others and we managed through it - peacefully, positively and productively.

When I want to rip my daughter's head off (figuratively), envisioning our family in the news, I take deep breaths and look through the photo album in my mind. Visualizing pictures of that cute, sweet, addicting baby that we were told we couldn't conceive (a joyous birth followed by surreal miscarriages) but is here in the flesh - driving me nuts at times, but she means the world to me and she knows/feels it.

I tell my kids how honored I am to be their mom and my actions demonstrate that unique and genuine affection. Oftentimes I miss them when they are sleeping...

Prediction is, someday my daughter be like her quality brother, shameful of the stresses her behavior(s) put us through and in that moment of her sincere regret, I will be assured that her dad and I raised another quality child ~ one more with awareness, compassion and thoughtfulness. One who recognizes the sacrifices made to provide the best life possible [despite the unthinkable childhood "I" survived]. I'm here proving that history does not have to repeat itself and that there are no excuses not to appreciate your living and breathing child (despite their behavior) minus any conditions. I survived many obstacles as a testimony --through deep reflection and forgiveness ~ that good things are possible.

During an appointment with my wonderful vascular surgeon, I brought up my concern about some scaring and huge lump/bump/hump development; along with throbbing achiness and blistering bruises on or around my Ateriovenous (AV) fistula. Yeah I suspected I'd fall victim to this grotesque disfigurement on my arm, but I didn't expect it to occur so soon -  as I've only been on dialysis since 2014 and I was comforted (while panicked at the sight of other patients arm) in hearing that as long as your technician utilizes a wise & effective technique by not putting needle in same area each time, thus giving previous punctured area a chance to heal, one might avoid the permanent ear sore.


Upon Internet research, I've learned  that these lumps/bumps/humps are called pseudoaneurysms which developed from repeated sticks that are necessary to perform hemodialysis. Though cosmetically unappealing they are are of no hazardous concern and are common among dialysis patients. In my cleverness I have begun to knit and crochet sleeves -- knit/crochet colorful wrist band-looking covering for mine. *Also am pondering [currently working out the logistics] starting a charity where knitters/crocheters make these sleeves for dialysis patients.

During my doctors visit I had lots of questions about what is happening with MY fistula. Thankfully there was nothing too serious going on according to the ultrasound done prior to appointment, just a suggestion to have dialysis technicians stick the needle in a different area each time to allow previous area to heal, which makes sense. Right now, lump/bump/hump developing is where the artery or vein (can't remember exactly which) is dilated. Now its at two millimeters. If it gets to three, he'll re-evaluate to determine if surgery is needed. There is lots of space on my arm for techs to work with and if utilized, I can maybe avoid further horrendousness to my arm. Never do I watch the enormous & excruciatingly painful needle(s) going in or coming out but I'd hate to bring attention to something a professional should already know. Reality is: this is my arm, my life here. I have to assert myself in the gentlest most effective way possible. Note:[younger self surfacing] ~ very passively as a back up, had doctor write what HE recommends on a sheet so I can hand it to techs during my next dreaded appointment. Sigh.

So far during my health challenge I have been privileged quality care, for which I'm mindfully grateful. Oftentimes I compassionately think about kidney patients in various parts of the world. Wonder what kind of care they are receiving and how they are coping. I only hope one day I'll have the resources to altruistically make a difference in someone's life. Presently, this blog is a start.

With great reluctance, my son finally read a few of my blog post. I've been practically begging him (an incredible writer and avid reader himself) to read and critique my writings.

Having had a brain injury - stroke, my thoughts jaggedly flow through my words in text. They are oftentimes fragmented and all over the place. Something I'm aware of but can't change now. Hopefully my brain heals completely. But until then, THIS is a genuine representation of who I am today. Unfortunately I procrastinated with a host of things in the days of better health. A plethora of ailments is what I'm boldly journeying though presently ~ determined to cease every moment.

He is aware of the differences in his mom, of course noticing the drastic changes (decline) in my writing style; and he delicately shared with me his reasons for avoiding reading my blog.

An admirer of his mom, I had no idea. Even wished he could write like me, wow! He's so open...

My blog represents and reminds him what happened to his mother back in 2014. I'm sure my coming so close to death and the physical and mental transformations because of the health crisis causes too much pain that he's not ready to deal with. He is a physics and computer science major at a highly academically demanding college. He needs to be fully focused and unemotional to tackle the daily regimen required to be a successful college student.

He remembers how I use to write, speak, think. And all that is different plus more now, hopefully temporally. Being a lover of words, I was very precise with a richer vocabulary.

The difference with me now and then, I'm more fearless. Unafraid and less concerned about the opinions or judgments of others. Those who knew me before and see me now might have some ambivalence in experiencing the "new" me, Sage. Seems like it takes more courage for those to witness the outcome of tragedy than to live it. This is my life now. And If I am expected to live it with the utmost grace and tenacity, I would hope that those watching can loyally experience its benefits along side me for the long haul.

My son (and my husband  & daughter) is proud of me. They support me to the fullest and desperately want me to be authentically healthy and happy. Optimistically, I strive towards health and happiness daily. If not for myself, for them. Their unconditional love is my motivation. My inspiration.

It is my hope that my readers out there recognize (or can relate to) my journey. Each post takes a great bravery to post [and hit the button, "share"] as I'm my biggest critic. It agonizes me that I have yet to find my original "voice" in speech or in writing. Despite my struggle, I'm on the path to gold in which getting through each day without giving in or giving up is my ultimate treasure.

So far, my readers are silent. May they all one day soon acknowledge by sending a "shout out" to express, "we hear you"...

And if anything, in the long run, hopefully, I'm not boring. Fragmented maybe, but not boring.

My eighteen year old son is home from college. He came home before, then left again to work on campus and is now back until school resumes. And of course, happiness is grand when he's home.

My kids are always teaching me (yes, one of their primary role models, teachers and parent) something. I learn something new and beneficial about myself, about them or about life in general. I must confess, each time I'm amazed. Small, then big and growing conceptions of their dad and I's love has been my greatest physical examples of what matters in life.

Talking to my son now, on an intimate level (we are really close) is enlightening. He is conformation of all the sacrifices, discipline, education, modeling; guidance, love and nurture were all worth while. If I weren't his mom, I would wish to have some sort of connection with him, the person.

I look and listen to him, thinking to myself, "wow, what a human being".  His thoughts, ideas and beliefs are his own and he is comfortable in knowing he can freely share & be anything with his parents. We are and always be here for him. I've always reminded my kids to be acutely aware and thankful for the quality of their lives.

Recognize everyone is not as fortunate so approach challenging social situations with compassion and be grateful that some of life's insurmountable devastation's are beyond even your precocious comprehension. Stay conscious. Surround yourself with authentic substance & quality. And be authentic and of substance & quality.

I have profound gratitude in the knowingness that all that time, during his developmental adolescence when in maternal frustration I "thought" he wasn't paying attention or "getting the lessons", turns out, I was wrong. My heart smiles every time I watch him ~ evolve more than the embodiment of what I envisioned at his birth.

Embarrassingly gained over 5  plus kilos in ONE weekend. Argh! This is not good considering what I'm up against. Kidney disease has certainly been humbling at times. I consider myself a disciplined, mindful, rational, cautious person. But if I can't control the liquids I  consume, what am I?

My dialysis days are every  Monday, Wednesday & Friday. Rain or shine, holiday or not I must be punctual in that blue, cushiony dialysis chair promptly by 4:45 a.m. Fortunately always accompanied by my dear husband.

As I type I'm nibbling on a few small chunks of cold watermelon. This succulent, beloved fruit will be included in my modest liquid intake for the day, so every bite though appreciated, is not as enjoyable as it could be because of prescribed dietary boundaries. I hate this. And sometimes honestly, I just hate my life (thankfully this feeling is fleeting). But restrictions, limitations nobody wants. Yet to live, they are necessary -- for me. Sigh.

I must continue to improve. Mentally,  physically & emotionally.

Starting off the weekend magnificently. I received my monthly dialysis labs today (not sure exact term used). Everything they test me on - which are substances like: phosphorous & potassium (limitations explained in the Renal Diet) measures much like a progress report or report card. Having been an academic person in my formative years, still, I can appreciate this days readings from more of a "sense of accomplishment", relieved perspective.

Now that my taste buds are returning, it's getting more challenging to meet the standards required of this life or death possibility. Lately my readings have been very poor, almost to embarrassment and I'd rather avoid the "binders" (research for kidney patients) - pills nephrologist prescribe which I guess grabs a portion of the harmful parts from higher phosphorous & potassium foods from each meal - meaning, to my understanding there is an extra pill (which is large/may have side effects), taken before every meal that you'll have to add to your already lengthy assortments of medications taken to preserve your already compromised life.

To my disappointment, I have been undisciplined and perhaps unintelligent in my food choices and portions. It felt so freeing and less health challenging to binge (too heavily, I guess) on certain restricted food items. Since the onset of my health awakening, my dear husband had been closely monitoring my health, especially what I consumed ~ for my safety, of course.

And now that I am slowly returning back to a somewhat "normal" state of being, more independence and all, I've been expected, understandably so,  to be responsible for my own well being - when it comes to food, medication and exercise that is. It's like I was spoiled to some degree and lately, childishly rebellious toward the rules of mindfully controlling the quality of my sustenance.

I quickly learned my lesson when my adored & appreciated doctor and nurse practitioner and dietitian, they all gently informed me (all on separate occasions) that my labs are increasingly elevating towards my detriment and it was imperative that I get a handle on my eating [and drinking].

My liquid intake has been too high as well. Perhaps this explains the extra bloating and puffiness that I feel and see. I've always loved huge glasses of iced water and I believe, times when I feel "well" I behave as if my health was fine and find myself going overboard with the liquids and the cheeses and such, which is the opposite in terms of Will Power that I'm modeling to my precociously observant preteen daughter, who's still at home, of course - watching my every move as if "I" need supervision.

I suspect I'm back on the right track now. Scary things can happen ( luckily nothing too severe for me so far, but there is a litany of undesirables, even death that awaits the recalcitrant patient) if  someone in my condition neglects to follow the requirements necessary in order to stay alive and well.

Life has an interesting way of slowing some of us down. Prior to my health situation, I was going and going - even with the chronic migraines, I kept going. Either my mind or my body or both was in constant motion. And there I was, thinking my daughter's death (2000) slowed me down. But looking back from this moment currently to before hospitalizations (I can no longer say, since my illness because apparently my health was deteriorating progressively over the years since 2000. I was just in denial, I guess), I was too busy. Yeah, I stopped working. Went on what I called a "hiatus". But fifteen years out of work is turning out to be more than a hiatus. And now, with a physical disability (without the benefits) I find myself fearless and motivated. In a letter to my clients fifteen years ago, I stated, "I'll return when my passion does". Staying away from a craft that I loved - hair-styling  was not what I planned. Hell, I didn't "plan" anything. Life just happened, for me, painfully [head held high]. My point in writing was to express how I'm currently reflecting on the realization the slowing down. And being on dialysis since 2014 now, I'm growing accustomed to this slower pace. Yeah 2000 I started seeing things in more of a slower fashion, I mean really really "seeing" with consciousness. The world seemed and has remained different since the loss, but it's more so. Now in this much more altered state, my body has been forced into idledom. Which forces an attentiveness. A sightfulness. Added discernment. Regardless of my ailments, I still exercise without any excuses. Push myself to do as much as I can for myself. Maintaining (controlling) a sense of independence despite any frailties. While on dialysis I'm doing things I normally did but with a different brain that forces me to try to comprehend in a intricate way. Common sense things no longer come as easy since the stroke/renal failure. Being challenged in understanding basics is foreign to me but has accelerated my growth in an odd way. Perhaps I'll write more concrete once I have found the words to express this feeling that I'm desperate to share. This feeling of appreciation in this life challenge that has me now a holder of a blue disability sticker for the vehicle in which I travel. Additional "stillness" is seeming to be a needed fortune that has me in this moment, blissfully grateful yet perplexed at my own gratitude. In my surreal lifetime I have been and learned to be even more resolute, resilient and rational with life's setbacks. In the slowness, becoming more thankful and aware of that which I'm thankful. Each milestone, rising like a phoenix within the stillness.

Took some much needed time to revisit my reasons for blogging. Now that I've regained my writer's confidence, I will document them here for personal reflection.

I'm blogging because I love to write. Even though I'm not trained or remotely skilled to write anything professionally, I appreciate this blogger forum to explore my thoughts in an open space.

I'm blogging because I end up typing really long emails and text to express a full thought. Over the Internet years I've been told, "you should put this in a book". Many people have told me they've saved my emails and text. Why? I don't know but I hope because they found my writing interesting.

I'm blogging because I wish I were a professional writer. I imagine myself in a nice secluded cottage some place picturesque.  Beauty and occasional ugliness has been my muse. I'd  rather create in an attractive environment. Blogging gives me the feeling of being a real writer - in my head.

I'm blogging because it's therapeutic. Through my daily experiences with life, with my recent health challenges (beginning 2014) and now with my recovery evokes a plethora of thoughts that I want/need to get out. Blogging allows me to purge those mental ramblings in one space. Being that it is shared, it forces me to be more reasonable, more rationale with what's flowing in my head.

I'm blogging because I would like to inspire others in some way. I may not write solutions or come up with lots of "Aha moments", but everything I share is coming from a sincere place and if readers have any solutions to something I may be posting they are welcome to share. This way, other readers may be inspired by another's discovery. So there is no moral to my every post. And that's okay.

I'm blogging because I want to share with others how I'm coping with my reality. What I deal with and how I handle it. Perhaps there is someone  (or know someone) dealing with the same or a similar thing. Reading my blog may help them feel less alone and more validated in their circumstances.

I'm blogging because after my near death health challenges, finally I found the courage to share what I write, thus what I think is shared with others - people, readers who may find what I'm writing interesting and not boring.  I hope to attract curious readers who want to know, "what's going on with Sage these days? Does she have her kidney yet?". Or, "what is she ranting about now?".

Like me, some personalities may find this type of writing fascinating. May be inspired by it's contents in an odd way - the honesty. How I get through dialysis, the aftermath of the stroke, follow the Renal Diet, home educate my kid, have a son in college, be a wife, friend, etc. And I realize my writing style, it's not for everyone. Hopefully like minded, similar minded which are unique minded personalities will find my blog and enjoy reading it as much as I enjoy writing it.

When I'm finally fortunate a healthy kidney, first thing I'm going to freely do is, drink a humongous pitcher of iced water with no trepidation, followed by an assortment of juicy fruits & succulent veggies. Dialysis/Renal disease - these liquid restrictions are killing me, figuratively.

Weight gain has become rapid lately. Weighing in before each treatment has become the bane of my existence. As of late, each weigh in is followed by emotional turmoil at its reading. It gets higher and higher which means, I need extra fluids removed at once, which poses a risk of excruciating muscle cramps during treatments or worse.

It's 4th of July holiday weekend now. I can barely enjoy myself with the constant focus on what I'm consuming in beverage or food. I thought I was self-disciplined enough to get through the complications of this disease like a champion. Lately, I  have been failing myself and those who possibly are inspired by me in silence.

Moments like these are when I wish I had helicopter type parents who hovered my diet and prepared healthy meals for me. Parents who were willingly involved with my recovery and longevity. Yeah, I'm an adult, a grown ass woman. But every child (young or old) yearns for the nurture and guidance of an unconditionally loving, supportive, generous, unselfish parent. Especially if they've never had it. I wish. I wish. I wish.

I wish I were financially wealthy to hire a staff - to cook, to clean. This way I won't have to worry about maintaining those necessary things that has taken so much energy, time and patience to successfully keep up. There would be no guilt or shame in having someone else do the work I've already "paid" them to do. When fatigue from the condition overwhelms me, at least I'll know my personal chef is preparing something suitable for the renal diet I'm on until I get a kidney. Even after the kidney, I plan to continue healthier eating habits.

And my hired cleaning person can alleviate me of my OCD habits and tendencies by simply maintaining a regimen of suitable sanitary and orderly living conditions in my almost hoarded living space (lots of books, yarn, board games, containers...) so that I can avoid obsessing over/ being easily distracted by the littlest, trivial things around me.

Eliminating the sodium intake is crucial. Not only for the high blood pressure, the stroke, the heart issues, the kidney challenges, but for overall health maintenance. High sodium can cause me to get thirstier and crave more liquids, which is something to avoid, so I do.

Before the awareness of my health conditions, I consumed high amounts of iced water on a daily basis. Craved it, enjoyed it. And now, with my frequent runs, bike rides, trips to the gym; completely active lifestyle, my appetite for water, for ice increases. I'm at a quandary. I can have so little liquids it seems so abnormal for me not to naturally drink what my body craves. Sigh.

Since my son has been home from college on summer break, I'm realizing my family has been in a constant state of shock since my 2014 health challenge.

Changes in him made me aware of the changes in all of us. He has become more inward with his thoughts and emotions which initially had me kinda worried and concerned. Intellectually I see he has been this way for a while now, and perhaps felt the need to retreat safely in his own head considering his mom, someone he's very close to is no longer mentally and physically available like she use to be. His giant of a dad, has been preoccupied with running our household. Carrying the load, the weight of caring for me, our daughter, while neglecting his needs.

My nearly dying has jilted us all into the reminder of the reality that tomorrow is not promised to any of us, regardless of the qualities of who we are as a person - shit happens.

Truly my husband and I had this grim awakening back in 2000, when our earth shattered forever - we lost a child, a daughter. Maybe I'll write more detail about this devastation in a future post, as the pain is always with me - revisiting the loss is no huge feat. But still, oddly on what would have been our daughter's 15th birthday, I get deathly ill. Bizarre.

Pain can enlighten. Pain can destroy. Ultimately the reward of tragedy is how we chose to triumph.

Quietly we've been doing what we normally do. Expecting nothing from others,  yet eternally grateful for kindness and compassion of those who generously showed they cared; just getting by the best we know how, with genuine optimism, with unwavering courage.

I immediately blogged this post with the intent of personal self discovery. What have I noticed. What have I overlooked. Right now as I do a mental review, press rewind in my mind, I'm recalling what my family has gracefully endured through and with my illness. The wife, the mother that once was, is no more. Yes, I'm here. I'm alive. In my naivety (and perhaps others as well), there was a drastic change.

Yet, my husband, my kids, they KNEW me before the health challenge. My son even shared when I asked him if he's read my blog, "the style, the topic of your writings remind me too much of your condition". Obviously I write completely different. I write from the point of view of someone adjusting and adapting to a different self. Seems as though, I have completely given up from trying to find "my voice". Sage's voice before the health challenge. Writing, expressing was so much easier, smoother then. My thoughts, my words, my speech, my cadence... It's a new me. Improved in some ways. Damaged, but not destroyed in others.

I'm sure those who knew me, see the new me now. Sometimes I wonder what they think. Hoping I'm nothing more than an inspiration, if anything. Strangers say they can't tell. Can't tell what?  I can hear, I can feel my differences. Oftentimes finding myself using the disclaimer mid speech, "I had a stroke..." when I feel my words are not as precise as they once were. Vocabulary less abundant or accurate. I worry sometimes I may sound lethargic or intoxicated.

Rebuilding, revamping is what they see, my family. Physically weaker but mentally stronger. Still the lamenting continues, only silently. Looking deeper into their eyes, I can see what they lost. And honestly, no time was had to grieve a loss. We all kept it moving. Meanwhile, we all lost something of value. Me, more independence, knowledge, energy, power and more. They lost Sage, a wife and mom that was a superwoman. We all have to relearn how to live with what's left. No time to dwell or feel sorry for predicament. Like my husband, my kids... keep going. And be thankful for what's still here, me.

Blood burst through my bandages and onto my dialysis chairs' white bedding sheet that I occasionally use during treatments. As I squeamishly avoided sight of this infrequent occurrence, my vigilant son (in his dad's spot for the day) remained near me unafraid, unmoved, unflustered by what he saw.

I was impressed by and admired his apparent fearlessness, his obvious manliness. Since he's been home on summer break he's shown signs of hard earned maturity, signs of astounding growth. Instantly, this day, my boy is no more. He has undoubtedly become a man.

More independent and knowledgeable in the dialysis process, I immediately removed the coagulated blood resting on my sheet at the nearby sink - aggressively and thoroughly rinsing it with cold soapy water. Still demonstrating what I do/why I do things with my son (or my daughter), the physics major knew of this necessity already. "Yes mom, I know", he responded respectfully, as he stood, six feet nearly two inches - gathering the rest of his mother's dialysis belongings on our way towards the exit.

Since he's been home, he's reminded me that he does not need babying, he's an eighteen year old man now. Innocently perplexed, maternally baffled by "where did all the time go", I attempted to reason with him, "you're my firstborn. You'll always be my baby", he grunts, I continue, pleading "just give mommy more time to adjust". No more patience, "mom, you already had eighteen years to prepare".

This day of the "bursting blood", I was remarkably calmer. My pleasantly attentive technician knows I can't stand the sight of blood, so she does her best to clean it right away. Typically, my husband is there with me.

I could feel something oozing down my arm, this is how I knew to look down, other than feeling its warm sensation, there is no extra pain during this gross event.

It's so common, but rare, other dialysis patients nearby just continue to do whatever they were doing, unfazed. Either it has happened to them, or it is going to happen eventually.

When I was becoming aware of what was going on around me at dialysis, I was horrified by the sight of the AV fistulas (research). During the beginning of my disease, a chronic dialysis catheter - CDC (research) was inserted into my chest. This is a temporary assess due to high risk of infection --which I was later hospitalized (for several more weeks) again for - catheter infection.

It takes a while for the AV fistulas to be surgically inserted and several more weeks for them to become functional. They have to "mature", and to help this process along, it is recommended that patients squeeze on a small stress ball several times per day. Slowly, patient will be weened from catheter to fistula starting with smaller needles on to much larger ones. Cannulation (Research this)

Suddenly coming out of my medically induced stupor, and the aftermath of a stroke (frontal lobe), I began to notice where I was (even though I had been transported from the Urgent Care facility I was hospitalized in via ambulance/gurney three times per week, for three hours each time), someplace foreign. Before my kidneys completely failed (was functioning at 5% by the time I became fully aware and had to be rushed to ER from a scheduled eye doctor appointment {blood pressure  230's/100's} - *I plan to blog more about how everything started later) room, I had no idea what dialysis was. Never even heard of it. And certainly wasn't prepared for it.

So when I'd go to get my treatments, I'd notice lots of elderly people around me, similar to my medical appointments. I noticed other patients and their visitors noticing me (I guess since I was considered so young and new). Along with minimal to slow consciousness of everything else around me, eventually, far far down the line, I became aware of other patients fistulas - and this awareness nearly caused me to have a public nervous breakdown/panic attack (well, actually I think I did) there in the unit. Began sobbing uncontrollably, as I observed the humongous needles inserted into the arm, two of them each visit. AV fistula cannulation - needle in artery, needle in vein (research process).

Seeing the huge, hideous lumps or knots permanently developing on some of the patients arms. Seeing large quantities of blood bursting from the bandages - soiling chair, clothing and onto the light colored floor. Watching the techs work to stop the blood by re-bandaging the area and using a clamp device to hold it until the pulsating from the fistula calms. *Research for more accurate information on why this oftentimes happens. Seeing the patient sit there calmly with all this blood squirting from their arm was terrifying to me. I'd ask the nurses, the technicians, "is THAT going to happen to me?"

Most avoided the question as I quickly saw. After getting my temporary catheter removed and the AV fistula surgically inserted, I became aware of my fate. Regardless of my countless fears (before this disease, I had a very high pain tolerance) and positive thinking for a miraculous healing, if I wanted to live, this was going to have to be my reality ~ regardless of any belief or my  personality.

The AV fistula is permanent. Even after I get a kidney, it needs to remain on/in my arm just in case the kidney fails. *Ironically, I have a half sister (paternal) with the same disease. Her mother donated her kidney. She still has her fistula.

For daily maintenance: I can never ever sleep or carry things in or lift anything heavy with the fistula arm. Never ever wear jewelry or anything tight on fistula arm. Never ever get blood pressure or blood drawn from fistula arm. Never ever anything tight or restrictive on fistula arm. Never ever compete in contact sports due to the risk of injury. Life changes in so many unfortunate ways with this disease.

There is always a pulsating sensation coming from area in the fistula arm, which is called the "thrill". The best I can describe it, it's like a throbbing heartbeat - which will remain in my arm forever.

I've had my fistula now for a little over a year. Already there is the huge disfiguring knot and permanent scaring formed from the needles being reinserted three days a week - which will also remain a part of me for life, even after I get a kidney donation. *I "think", I hope at some point lumps/knots can be surgically removed if they get too grotesque or too cumbersome.

I don't look at my arm anymore, especially not when the needles are being inserted (I notice some patients do watch the entire ordeal). I just remind myself, while taking myself tranquil and beautiful in my head, I have to bravely endure this, do whatever is necessary to keep myself mentally/physically healthy; follow the renal diet (research), avoid drinking too much liquid, get plenty of rest when needed (have no energy without proper kidney function), continuously & consciously surround myself with quality people, places and things. Importantly keep a genuinely positive attitude for not only my sake - because honestly, if were only "me", I'd chosen death long time ago, but mainly for the love and devotion to my husband and kids. For if it not for them, there would be no Sage.

Currently relearning how to sew. Have an old Kenmore from grade school. Had it oiled and maintained a few months prior to my illness. Since my health challenge, many complicated things suddenly makes since. While many simple things are hardest to figure out. Sigh. I don't know.

My son is extremely tall. 6'2''. My daughter is fairly tall for her age too, 5'5 (eleven year old). For my son, while he's home, I want to sew him some pants that fit. Since I had a difficult time finding a basic pattern for his height, I plan to attempt creating my own.

A friend of mine fortuned me with huge containers of fabric weeks ago which I plan to create lots of fun projects with my daughter. She has a newer machine, a Viking Emerald purchased Winter Solstice 2013. Though she's a tomboy, she does many traditionally girly things as well - sew, knit, crochet, etc. *Recently showed interest in dresses which was/is a big deal.

I'm sure there is some masculine material in there somewhere for me to design a pair of cool looking and form fitting pants for my slender built son.  Frugal, I'll find the most priceless way to make nothing into something.

This is exciting. Even just thinking about it (not yet doing), excites me.

"Mom, why do you always push yourself so hard?", my eighteen year old son randomly asked. We've always been very close. Similar and open to one another. I miss exploring our community with him next to me - walking through places holding his hand and he, laid back (like his dad) allows this form of motherly protection and adoration. Meticulously in tuned to each other's thoughts, behaviors and responses -- my birthday is October 15th, his October 14th, a factor? I don't know.

"I push because I always had to. I've always had only myself to rely on, and if I needed/wanted something, I had to make whatever that was happen on my own". Silence. Unable to fully comprehend never having anyone to trust or count on -- especially in your time of need.

He's always had his parents. Parents who served and filled the roles of an extended family - grandparents, aunts, uncles, cousins... His dad and I have been his all and then some. Coming into his own, he's quickly discovering some of his college mates have a community of people to count on in their time of need and/or want. Self-sufficiency is all he's observed in his loving home. No complaints, no whining, absolutely no excuses, we just "do" whatever needs doing, and that's it.

"Have you ever procrastinated on anything?", he later asked. I thought for a minute. It's unlike me to give him some BS answer. I've always been very straight and honest with my kids. Even too graphic in certain, I believe necessary cases. I thought for longer than I thought I should have. I knew I've procrastinated on plenty of things. Thankfully my kids, my husband know I'm no saint. I'm very flawed and I know and reflect on this. Sorta patient, like his dad, he waited for my response. Being intellectually and verbally slower now, due to the stroke I guess, he knows I'm no longer as sharp and precise as I once was. All forms of communication is a daily challenged for me. Even blogging.

"Mommy procrastinated on competing in an adult female basketball league. Now that I have this 'fistula (research Arteriovenous AV fistula & photos)' I can never compete in any physical type activities, without risk. I should have done so when I had better health". More silence. Quietly, he understood. His mom once was very active with him and his sister - academically & athletically. Along with borrowing sports books & videos from the library, we'd practice whatever sport he was playing for that season. Even if I've never played before, I'd coach from watching to doing; and from learned knowledge through research and close observation of other coaches (the quality ones).

Since he's been home on summer break from college, I've been trying my hardest to spend every moment with him. I missed him so much while he was gone ~ took comfort in the fact that he was somewhere safe and sound. That I can see, hold, smell, experience him again - unlike where my deceased child is. Yes, morbid sounding, but this is the perspective I use with lots in my daily thinking. I know what wailing/longing, gut wrenching, life alternating agony is, and the permanent results of the kidney failure/stroke/aneurysm on my aorta is not it. I've survived parental bereavement for a decade and a half now, and my does time fly. I remember doubting I'd survive, live another day without my child, but I did. If I can live through that pain, pain which continues, pain which lead to this current illness. I can survive anything, especially petty, trivial day-to-day hurdles.

Reality is, much of what exist, what is endured is trivial compared to losing a child, so I courageously press on with my day to day. Gratefully get up, get things done kind of attitude.

I was anxious for him to be home and see how much I've improved. When this health crisis first occurred, he was in the mist of finals - completing junior college and applying for universities at the time. It was a very stressful period for our small family. But somehow, we survived like always. And being a survivor is what I hope my kids are watching. Languishing in repairable victimization and fixable failure is not an option. Through every situation, I  believe in looking inward. Learning what I can about self. How can I attract positive or repeal negative situations. What are the people I chose to have around teaching me about who they really are?  How can I rise, like a phoenix - more powerful.

Hope they are not seeing weakness in mentality. This time weakness in physical was blatant. For the first time, I had no choice but to rely on others - my husband, my kids, my dad for the short time he stuck around, friends, doctors, nurses, other medical saviors. And my forever cherished therapist.

Right now, my son sees me doing things without assistance like: independently brushing my teeth. Walking to the toilet. Drinking. Eating. Bathing. Sitting up right. Walking. Driving. Speaking. Comprehending. Typing. Writing. Reading. Making decisions. Exercising. Running. Going up/down stairs. Taking my own medicine. Being home alone without my husband near by for several hours at a time. Being alert and aware of my surroundings. Multitasking. The list goes on. Practically an invalid this time last year, daily I'm amazed. For the first time, humbly in awe of myself. Worthy!

I vividly remember laying in my hospital bed - which became my home after two months or so (was in and out of hospital during the beginning of illness) thinking to myself, if I ever get out of this bed, I'm going to ... There was a list basic things I wanted to do and experience before my end.

I wanted to hold & squeeze my kids longer than during those brief visits they had at the hospital. (My husband protected them and rightfully so. I was not in good shape. My daughter still talks about the horror of seeing her "mommy with noodles hanging from her mouth" while in a complete stupor).

Do things I was once reluctant to do or put off, like "play basketball" or talk to certain people - look past their unpleasantness and try to see more substance. I've always done this, but before I would internalize the behaviors of others more. Forever being highly sensitive, I would lament, "what did 'I' do wrong" and try to resolve it with extra kindness. Insecurities from childhood, I know. Unreasonably stupid, but true. Glad my kids didn't inherit the disease to please. They've always been rather secure and confident. Leaders not followers. Observers of foolishness not joiners, thankfully. Wait, I just remembered an incident or two. To be more accurate, "rarely" joiners of foolishness...

Now, I'm sure people are dealing with their own issues, their hidden demons if you will. And there is nothing I can do to change who they are. Other than my typical genuine kindness & compassion, I can give a possible negative person the energy they're familiar. Little do they know, I may have been where they are or I may be enduring something far beyond their comprehension myself. I just don't show my misery to the world. If I blamed strangers of the world for my bad days/life, what example would that represent to my kids? How is meanness/cruelty/hostility benefiting my life? I digressed.

Intentions were to let my son see my day in its authenticity. Mommy is alright. I was so proud of his accomplishments with all that he was going through privately. He's private so most of his friends and acquaintances didn't know his mom nearly died from 5% kidney failure. Being a proud and stoic person myself, I begged him to share his hardships with his friends and others from my hospital bed the best I could. Frustrated in my fragile state, I fought to get him to allow others to cloak him in love and support and compassion since I could not. His dad was a rock for all of us.

This was a good opportunity to see others for who they were. Fair weathered or foul relationships. Give friends a chance to demonstrate traits of a loyal friend. And acquaintances to show their character as well. And oftentimes along the way, meet strangers who become instant friends.

Finally I was able to teach him to do something I've never been able to do, ever - let people in. Let them see you vulnerable. If there is a need, give some benevolent, unselfish person a chance to do something humane on your behalf. It's okay to be a recipient of kindness. Believe me, being a people pleaser, or a giver all the time gets exhausting. Like your mom learned years ago, chose your relationships wisely - so that in the dark, devasting times, there will be minimal to no disappointments. You may feel alone, but you won't be alone. People need people. Helping hands.

Being completely vulnerable and letting people in was my biggest life lesson received from this illness. Being totally unafraid of the thoughts & criticisms of others was another big lesson. All needed and valuable lessons. Life is fleeting, favoring no one regardless of personal beliefs or personality. Randomly good times can unexpectedly shift in an instant. No warnings. Life won't seem to care about your beliefs or your personality. Awesome things happen to bad people all the time. Awful things happen to good people all the time. Life happens to us all, keep living...

Noticing how fearless I've become.

Starting and sharing this blog is one of the most courageous things I've done since my illness: other than continuing to choose life instead of defeat. Get up, instead of give up ~ positively contribute to the planet. Staying optimistic about my health. *One doctor who visits other patients at my dialysis unit commented that every time he passes my chair he see's I'm smiling. Looking pleasant. I believe people can sense a fake and a fraud. Apparently he sees my outside reflecting whats inside.

Finally, I don't care what anyone says or does, I'm being and expressing me, Noticing how I'm leaving messages on blogs and other websites - which is something new for me. Someday soon, I may even start twittering.  Facebook? I don't now yet.

I have a collection of writings some where on a dated computer of ours filled with: my poems, short stories, essays, etc. that have never been read by anyone aside from my husband or my kids. Never have I took the risk to write anything on the Internet to anyone. Look at me! Once I realized this, I'm freely exposing myself, my feelings, my thoughts... I had to blog.

I use to care what others thought. Fear of being judged or misunderstood until I realized, I was worrying about what an insecure, inept person (who I more than likely didn't respect or look up to) thought most of my life. Ridicule received from others can come from dark places inside someone's soul with the intent to bring you into their abyss. Yeah, I go back and research some of the old school tormentors. Look at them now. See them, finally see them for who they are (or were), wounded people wounding others. And now I'm like, I actually cared about what THAT this person thought?! Where are they now? Where am I? Compassionately I've moved forward.

My kids never cared what others thought. But then again, they are being raised in a completely different environment. They entered this world under different circumstances. They are safe & secure; been protected & prioritized -- some of the possible reasons why they KNOW they are loved unconditionally. They feel loved. They hear "I love you's", though we don't buy them much of anything. It is our presence not our presents that counts. Fortunately so.

It's a late hour and I'm up feeling jovial and inspired. Just watched this instructional sewing video on YouTube. Whoever invented this technology is a genius! I just love, love YouTube. There I watch instructional videos mostly. There is absolutely no excuse to know nothing in this modern day. I'm shocked when I meet a person who doesn't appear knowledgeable about anything. There is just so much to learn, so little time. How can anyone be bored with an array of subjects at your fingertips.

I plan to learn a several languages during my time on dialysis. Most of my technicians are Filipino. They speak Tagalog. I'm going to learn Tagalog and Spanish - which has some similar "sounding" words, of course, I'll confirm. Then go on to learn more languages from there. I'm going to use this time wisely - I'm on the machine for three hours/ three days per week - every week (including holidays) for the remainder of my life, or until I receive a kidney from a live donor (better) or otherwise (okay).

Also, I'm going to perfect my math skills. Seems like what little I know (my husband is a math person), faded from the stroke, so I'll improve during this time by utilizing several resources - library books, Internet sites, CD's, etc.

My kids know better than to say , "I can't" or "I don't know". Yeah, they'll say, "I don't know, but let me find out". Instead of "I can't" it's "I'll try" because I'll never expect anything undo-able from them. As long as they are able bodied, they are functional. They've been taught how to research and discern information early on, which makes home educating easier since they've been guided and groomed to be competent during their spongier years - starting at infancy.

Seeing me, a doer struggle with ailments proved to them anything is possible. If my mommy can get up and do all the things she does without constant whining and complaining, then I better get off my rump and not disappoint. They've witnessed the pain behind closed doors, but when I go out into the world, there is an affable, stoic spirit. Inspiring rather than burdening others with my issues.

Don't have a computer, no excuses. Go to the library! No library in your area, find the nearest location. Don't have transportation? Utilize public means! Just go and be adventurous -- all the free, accessible resources that are available for you and me to explore.

I've relearned how to knit and crochet on-line. After my stroke, I had to relearn how to do the simplest things - writing, typing, sentence structure to name a few. Couldn't walk, now I'm running a mile at the gym followed by biking for 30 minutes!  Still home educating. The list goes on. No excuses. It hasn't been that long, (2014). My health challenge hasn't stopped me, what's stopping you?

After over twenty years of marriage, I still get goosebumps whenever my husband leans over from behind me, to show me something. All of my senses sing harmonies whenever he is near. I miss him when he is sleeping. *I miss my kids when they sleep as well.

Like just know, my computer-challenged self needed help to print. My husband, he comes over from his computer - which is behind me, to assist me. No grumpiness from having to stop what he was doing to help me. No selfishness. No anything negative, which early on in our relationship, I had to learn to accept. Finally having someone in my life of saw me. Loved me for me. Found me worthy.

My husband: So smart, so tender, so attentive. Broke and all, material things don't matter much to me. I'm loved. My heart is safe with him. We struggle together. Soon, we'll achieve success together.

Already, my kids want what they see their parents have. They grew up seeing consistency. Genuineness. In a marriage, they want: A loving and loyal mate which is a friend they can trust.  My son someday finding a woman similar to his mom. I tell him, "please honey, avoid the unconscious ones with the severe wounds, mommy was a lucky one who survived. We don't need/want any drama".  My daughter, a man like her dad. The bar is high. I remind her, "when the time comes, be patient. Be open. Be awake. Like mommy, be ready  and worthy to receive your king".

During a late evening stroll with my daughter, I went over basic mathematical principles with her. Having had an aversion to math as a kid myself, it was paramount that my kids be academically sound in this much needed and valuable subject.

Since I plan to introduce algebra into her curriculum soon (my son had it at an earlier age. But he is a different learner), I want to make sure she comprehends everything else first before moving on to something more challenging.

This night, I went over "change". Weeks ago I noticed she had some difficulty telling me how much change I was suppose to get during a grocery store trip. Randomly, in real life situations, I ask my kids questions.

Surprisingly (she's very bright), she was very dismissive. This made my mommy radar elevate even higher. Since I'm paying attention to what's going on, I grab this teachable moment by the horns.

Turns out, she is was very capable of doing this "change" on paper, but doing it randomly, off the top of her head, a challenge. I've always had my kids using book dictionaries so they'll know how to use them. Calculators were used only for learning how to use them. Calculate the whole problem long hand on paper is what "Sage" requires. Her not knowing how to calculate change in her head, this is unacceptable, so I've been revisiting certain areas mathematically.

I loved grammar, literature and art as a youngster. So I understand math may not be her immediate strength. Fortunately, she's willing to learn. And, she loves science, which is great. Regardless of her interest, there will be no excuse to be ignorant in a needed subject, which is math. As it is, she's asthmatic (so am I). And that hasn't stopped her from running, competing. No excuses!

While walking and talking (something my now 18 year old son and I use to do often), we held hands as we both smiled marveling at the nights sky. I'm so thankful we live in such a peaceful community. Sure, anything can happen anywhere, but usually I fell comfortable enjoying excursions such as an evening walk even though things are horribly affordable. We sacrifice, for peace...

Due to the pleasantness of us both - she drawing closer to experiencing that time of the month, me have already left those days of a dreaded time of the month - it was a nice time to introduce something she has been avoiding. Math.

Asked her the question. When it took her longer than I felt it should to answer the question from her head, I shared with her what worked for me when I was a kid. Days ago, her dad shared his way. Earlier today, over dinner,  her big brother (a physics major who has already earned several degrees from starting junior college at age fourteen) shared with her his way.

Seems like she better understand. There was no pressure. We were out, having a good time and enjoying each other completely. Just this time last year, I couldn't walk with her without passing out after a few steps. I'm so thankful to have part of my mind back. So thankful to have parts of my strength back. So thankful to be conscious and to know what's going on.  Just thankful.

In golf, a gold medal was earned a few weeks ago. Golfed 2 under par. Instructor handed me my daughters card. Didn't comprehend why he'd show me. Obvious ignorance to golf had me more aloof, but thankful. My husband explained the significance of golfing under par during our route home.

Success or challenge, I'm usually neutral. My focus is on my daughter's body language. Her demeanor during every win, every loss. Is she humble. Is she supportive. Is she sensitive to her opponents. Is she arrogant. What's her internal dialogue. What did she learn from the win, the loss.

One thing I've noticed is, in certain sports (she competes in many) like golf in particular. You get whatever you've earned. Any unfairness becomes more limited. Seems like there's less of a chance to receive any form of accolades, any form of special treatment without the cultivated talent. No being selected to some important position or group because of nepotism. You received what you earned.

Having attended a couple of little league All Star games, it's apparent some players are routinely selected to this privileged opportunity for reasons other than talent or temperament. Our daughter attends these games with us and sits through the observation of watching certain players struggle in positions where she undoubtedly skillfully excelled, but have been repeatedly denied the honor to participate. Impressively, she spectates while maintaining a positive attitude. That's a champion.

I believe it builds character sitting and watching others doing something you deserved too. She sits, she cheers, burgundy/white pom poms in hand with a pure heart. Former teammates pointing, perhaps noticing her arrival from the dugout. Hopefully they too are learning something substantial through being aware of  her presence. Some probably knowing deep down, she should be in their spots. When the other parents of these chosen All Stars see us, hopefully they see something genuine in all our characters. We come to support, to encourage; but all to enlighten ourselves and our child.

Maybe watching some of the players she's competed against or with  over the years will motivate and regenerate her game style to some capacity. Watching an All Star level  could excel the intensity in which she competes. She'll have something to draw from next time she steps foot on another field.

I believe next season, times when I constructively critique my daughters performance, she has a better understanding of why I inspire her to push - "pain is weakness leaving the body", to do her best. No goofing around during practices. Listen intently to the coaches. Let mommy help you when her energy permits her to be able to practice with you - don't take this precious moment for granted.

Practice perfect until it becomes habit, is what I instruct. Under certain circumstances, I instill excellence in my kids. Not perfection, excellence - which means, in our household, "doing your best". Pushing yourself. Perfecting your weaknesses, solidifying your strengths. Getting stronger, faster, quicker. Building your endurance, your stamina, your flexibility. Applying what you have been taught and researched. Be competent and courageous.

Even when you're good, be excellent. If you're going to quit, do so based on your timing, give no power to others to force you into quitting due to some unfairness{es}. If you aspire to be the first female MLB player, then keep going. Stay fit, get stronger. Mom & dad got your back.

Just imagine if I gave up when I lost a child. Gave up when my health changed for the worst. Just imagine if I demonstrated being a quitter to my kids. Yeah, I stopped working when my child died. I had to for my own sanity. I was self-employed. I had to figure out who I was. Suddenly, life became about me, not the people pleasing I was accustomed to. Unfortunately, now that my mind is right (to work), my body isn't so much so. I trust that things will work out. They have this long. I digress.

My daughter earned another medal in golf since the previous. A silver. Both rewarding because in this sport, she received exactly what she earned - through hard/smart work. Through perseverance.

Rarely do I feel like an adult. Oftentimes I resent having to "act" like a grown ass woman - with maturity and sound choices. I guess this is the result of such a challenging childhood. Having to grow up too fast has it's disastrous setbacks. Early trauma's can mentally (and physically) stunt growth and development.  As an adult woman, I find myself longing to have emotionally available and unselfish parents loving arms to sob into any time of the day. I remind my kids to be thankful they have parents to lean on when times get tough. We will always be here - no judgment. No criticism. No resentment towards them needing/wanting us.  We brought these precious lives into this challenging world. We knew intellectually there will be times they'll need us, even when they reach adulthood. I wonder do sexually irresponsible people ever think about what they are getting themselves into when they put themselves in a position to create a child. Daily I worry if I'm guiding healthy minded human beings. Am I (and my husband) modeling quality behavior to mimic. Are we choosing their environment consciously with quality people doing quality things? Are we demonstrating effective ways to choose our relationships wisely; while teaching people how to treat you (with respect). During my parental bereavement, during my health crisis, it was imperative for me to conduct the sudden loss of my child, unexpected loss of good health in a courageous, civilized, controlled manner. Grieving without taking my personal pain out on others; grieving while still caring for my responsibility without complaining; living the remainder of my life with strength, dignity and respect. It's just the four of us, and hopefully I've shown them that all things are possible with a positive, productive, peaceful attitude. Get through life's adversities with an open mind towards learning beneficial lessons about oneself, about ones fellowman. Evolve as a person through pain. Become more fearless, more ambitious. Leave this life with something good because of you. We can't chose our family. We can chose our friends, our environments. Who you chose to have around you (positive or negative energies) is a choice. Any negative family members we can sagaciously love them at a distance. Have a forgiving heart while wishing them the best without being affected/infected by them. Sometimes when you have kids to raise, it is best to protect them from negative, destructive influences. Don't risk them ingesting the same poisons that nearly suffocated you. If you barely survived horrific dealings with your parents or the people your parents chose to have you around (and seeing, knowing how wounded you are), why have your kids around these same type of folks?  Is the aftermath worth it? I'm really a small child in an adult body. I wasn't finished growing up when certain things were permitted to occur to/around me. I'm more the wiser having hit pause  on my unconsciously lived life decades ago so that I can  adequately and begin to fearlessly comprehend and reflect. This is scary and risky. People tend to stay busy, keep lots of people around so that they will not be alone to think. To remember. Running away from pain is a survival mechanism but a dangerous one. Sometimes life's experiences forces you to stop while the rest of the earth continues to rotate around you. You may want to get back into its rotation prematurely without being fully ripened, but tragedy can paralyze you into remaining still. remain on the wisdom tree until ready to be harvested. This happened to me twice. Each time I got stronger get wiser, probably smarter too. But still, never feeling completely like a grown ass woman. Like my kids are privileged to do, I wish I could curl up into a parents arms. Experience the aura of security, warmth, love, nurture and awe.

I'm so excited. In one hour, my husband is going to rent an average sized moving truck. It'll stay parked on our street until first thing in the morning (Saturday). He's driving it solo, due to spacing, to pick up our first born. Our eighteen year old son from college, which is about an hour away.

I'm so happy and this is all I think about. When I get down, this is my happy thought.  My tall, gorgeous adult-baby will soon be in my arms again. *Reminds me when my husband first brought the kids to the hospital. He wisely kept them away initially. I was in bad condition. When I held them both in my arms, while in my hospital bed, the rain clouds parted. The sun shined on my bed that day.

My son hasn't responded to many of my frequent phone calls since school started last Fall. My conversational needy-text would hurtfully go ignored.  Adjusting to this new chapter in my life, I'd keep busy with my youngest, with my recovery. with my marital commitment. As for my son,  I thought we'd, being extremely close and all, would communicate via modern day resources: phone, email, text, Face Time, Skype. I was accustomed to him being away from home when he skipped high school, instead, going straight to community college at fourteen.

Responsibly, he'd catch the bus to school. Tutor students. Participate in substantive activities.

Graduating ~ several degrees later, now at a four year college, he's farther away from us in mind and body. Never could I prepare myself for this detachment. Seems like yesterday, we were flabbergasted. Immaturely trying to figure out what to do with this new responsibility: a long crying creature once we returned home from the hospital. Always tackling things on our own, no complaining, only celebrating. Somehow, we succeeded.

Days after my/our son first left home, I sent him a text that read, "honey, do you need any condoms?" Minutes or seconds later, my phone rang. Finally! I can hear my child's voice again.

Sternly, "mom, I'm not having sex!" Instinctively I knew this was the case. He was raised with me/ with us talking openly about about the topic.There was no fear-mongering, only scientific facts.

Had him research certain things. Ask questions. Many things we all learned together. Creating and maintaining a safe and secure atmosphere so he felt free and heard; and seen. Checking out "what a boy needs to know" and body parts type books. Lots of science - biology, anatomy. Appropriate literature on sex, STD's. Spontaneously & liberally discussing emotional dangers of early sexual intimacy. choosing mates using your brain, etc. Educated him very early on about healthy boundaries. Self-defense. Good touch, bad touch, along with being vigilante. Paying attention. Keeping my kids a priority. Making sacrifices because they didn't force themselves to be born. I/we made the choice to give them life - and we, as a couple were responsible for that life.

Having survived a challenging childhood myself, I know firsthand what being ignorant to your body feels like. Feeling scared and alone. Having no one to confide in. Not understanding my power and my right to set boundaries.  Self-blame for adult neglect. Certainly, I could have turned a different person. I'm compassionate. Easily I can empathize, sympathize. More than likely, I've been there.

Never can I be too busy, too aloof, too self-absorbed, too naive, too anything to let predators penetrate their innocent lives or their pure bodies. Parenting is so hard, especially when you're a wounded adult. My pain was not in vain, it made me the parent I am. I digressed.

*It's amazing how a post about one thing can lead into something else.

He's coming home and I'm so elated. Days ago I texted him, "honey, be prepared for a kissing attack". That's what he called them when he was a little precocious kid. When he was born we had this awesome pediatrician. He was a fairly new doctor at the time. Very smart. Very calm. Very likable young man. During one visit, doctor did a routine check-up which included removal of my son's diaper. A faucet-like stream unexpectedly began to...doctor's shoes ended up soaked. Older, new parents, clueless, and alone navigating our own path through life. Nervously, we all laughed.

On another visit, I remember asking the doctor, "if I kiss my baby too often, will that affect him (his skin)". May sound like a silly question, but I was concerned because I couldn't stop. And until this day, I won't stop. Looking back, seems like most of the day I was kissing and squeezing and holding, and cuddling and staring at this new life created from unconditional love. The happiness I felt then, continues. I am so honored to be his (their) mommy.

"Ouch!" awakening from a sound sleep.

Loud screaming echoing from my bedroom. My husband leaves his desk, where he works from on my dialysis days. I'm in our bed napping before my eleven year old daughters evening golf activity.

Sporadic jolts of severe muscle spasms has been the case since about fifteen minutes remaining from morning dialysis. This particular day, I was heavier at my post treatment weigh in - research dialysis dry weight, so technicians had to remove extra fluids (especially since we were going into the weekend.  With two days - Saturday, Sunday of no dialysis - artificial kidney doing what healthy kidneys do). Bravely I lay there in my chair. Figuring I'm so tired, I'll sleep through extra pain.

My  husband rubs the cramping areas. One at the base of the top of my right foot. The other behind my right knee. I felt, it too late into my procedure to notify technicians, willpower came over me as I counted down to the final hour.

At home, rubbing this sport cream he uses for his cramping after competing in adult men's basketball helps me to some degree. My daughter, doing assignment in her room next to ours wants to help. I request, she continues her academics. He gives me a baby food sized glass we've kept since our son was an infant, filled with Gatorade to replenish lost fluids from the days dialysis treatment. Reluctantly, still sleepy,  I drink. All I want to do is, get back in bed.

This weekend I'm determined to not gain too much. Push through those cravings. Fight the thirst. Last thing I want is any more discomfort.

It could have happened to me.

Big, strong, focused men quickly took up space near my dialysis chair this morning. Familiar faced, I recognized that concerned look as I awoke from a much needed nap. Hours earlier, my husband was encouraging me to go to sleep. We have a busy day ahead. Curiously babbling about nonsense to whoever was near or would listen. Typical of my behavior when I've been awake all night.

Seemed like it was a lifetime ago, when yellow and blue suits, thick boots and gear were at the dialysis unit for me! It was February 2015, exactly one year after my release from a two month long hospital stay back in February 2014.

February 2015 (with purposeful plans to revisit my transitional care unit to express additional appreciation and to show them how much I have improved), I was at my usual time, early a.m. being dialyzed. Suddenly I was jilted awake from a nap in excruciating pain. There were these unfamiliar, rapidly progressive tightening in my chest. Difficult to breath or to speak, I gestured one of the technicians over to my big, blue assigned chair, #21. Pointed to my chest, muttered "pain" I think was the word. My husband must have gone to the our vehicle for something at this time, but when he returned, several technicians had began to surround me.

Quietly wondering, "was this pain all in my head", as it was so sudden and unexpected. After all, when I fell off to slept, I felt fine. Eventually it became difficult to breath. Our on-sight nurse gave me a pill to chew on or keep under my tongue (I don't recall exactly) - which is a common drug for this situation, nitro.

About every 15 minutes or so, I was asked if I felt better. Typically with a high pain tolerance in my distant past, "No" was my worried reply.

The nurse asked if I wanted them to call the paramedics. Never wanting a big fuss over me, I asked, "do you have to?". She proceeded to tell me, I paraphrase, "we can't let you go home like this". Soon afters, she made the call.

Continued in an uncomfortable incline position, I asked if I could sit up. Being an asthmatic, standing or walking around (and hovering over) brought forth some slight relief. For the first time, it failed. I began to silently panic from my discomfort, from my ignorance to what was happening. Naively I presumed, all I had to deal with was complications related to my kidneys or something with the frontal lobe stroke. I'm still learning about this disease. There is so much knowledge required.

By this time, nurse had administered several nitro tablets while the paramedics (and fire department) were in route. The more time passed, the tighter my chest became, the more terrified. I looked over to my stealth husband, "honey, what's happening".

Once the emergency workers arrived, they immediate surrounded my chair. Much like what happened to the other patient this morning. They were professional and immediately earned my trust. I felt I was in safe hands and these guys were going to help make things better.

They asked the nurse how many nitro's I already had. Eventually they requested I be given one more, which didn't make a dent. By this time, I was prepared and ready to get on somebody's gurney. Get me to the hospital, I was thinking. Quickly my husband began gathering our belongings - the lawn chair he brings to sit in for comfort. My huge, overstuffed dialysis bag. My blankets, sheet, and pillow which draped the chair.

This morning, I could feel a few of the paramedics subtly being aware of me. After all, what is a young, fit woman doing in this predicament surrounded by all these geriatric patients? I can read most people's minds, especially when it comes to this. Look at me, though my locks are silvered, I can easily be passed for someone in their early 20's (just kidding, late 30's). I digress.

Back to February 2015, I was transported by ambulance to one of the local hospitals of my choice. Exactly 15 years ago, I lost a child. I avoid going to the hospital where she later died at (not that there was any negligence there). As a result, I was whisked away to a hospital a little bit farther (the one I was initially hospitalized in).

Today my husband and I were able to watch the ambulance take that other dialysis patient away. Curious, I asked if they has lights flashing like that with me. He remembered, the driver specifically telling him, he wouldn't be able to follow. During my 2014 hospital stays, it was common for me to travel to and from my dialysis treatment via emergency vehicle. Secured on a gurney, unable to communicate, my dear husband following behind, or on board my assertive and knowledgeable voice and loving advocate.

Memories are slowly resurfacing as I type. I want to post this before nap in preparation for my daughter golf tournament later in the evening. Anyway, I arrived to the hospital with these amazing guys who made sure I was comfortable, answered answerable questions during the trip there. I found myself trying to memorize all of their names, like year prior. It is customary to draft and deliver "appreciation letters" for significant quality service I receive.

My husband right there, where he has always been, inquisitive and prepared for whatever happens next. Naturally calm and impressively optimistic, we rested in the hospital room feeling out billing requirements and providing health information.

By now, I've had I don't know how many nitro's. My condition was progressively worse by now, yet I was grateful to be at the place where wellness was possible. Over the years, I've been privileged amazing care. Had some really smart physicians caring for me, along with other competent and compassionate medical related professionals.

Here,  now in the ER, my panic had lessened but was still prevalent enough to cause quiet stress. All this time, my husband was rubbing my body - shoulders, arms, legs while assuring me, everything will work out just fine.

Many tests were done to determine the accurate nature of my discomfort. It was later determined that I had suffered an aneurysm in my aorta. The quest efficiently became, is operating imminent.

On this day, I was hospitalized. Emergency workers said their "good byes", I along with my husband expressed our sincere gratitude then off they went to save the next person.

Fortunately, my aneurysm wasn't fatal and will require routine monitoring for the remainder of my life. My hospital stay became more relaxing than the previous two. This time I was alert and independently functioning. Honestly, I recall mentioning how much I needed a break. Being hospitalized for so long the first time was like home for me. I grieved not having nurses care for me, I missed the noises and the meals. Weird, but true. Perhaps my secret longings attracted another hospitalization into my existence.

Positive thoughts go out to that dialysis patient in needed of emergency care. I've learned to be a tiny bit more thankful each time I return home from my early morning dialysis appointment. Like I said, anything can happen. It can happen at anytime to any one of us. No one is exempt - no matter how good, how bad; how righteous, how flawed. Tragedy, without warning can easily seep into our reality. This is why I'm glad I'm a thankful person. Taught my kids early on to be thankful.

Don't spend your days, your life complaining. Whining and not doing anything to improve your misfortunes. There are people suffering worse, and may wish they were you! Be grateful.

Nap time.

Since I'm beginning to doubt I have anyone in cyberspace reading my possibly boring post, so why not write about what's going on at this very moment for a feeling of a needed "release". This personal blog is a type of therapy for me, right?

I just tried to have a decent bowel movement.

Currently it is Friday, June 12th (2015), 1:23 a.m. In approximately 3 1/2 hours, I need to be up and out the door and in my dialysis chair no later than 4:45 a.m. Had a busy-fun day but I can't sleep. My eyes are heavy and itchy. As of now, I'm the only one in my home awake, as usual.

I'm wired but too fatigued to do what I use to do, [prior to Feb. 2014] which was clean -- scrub and dust an entire room in my home. Reorganize. Discard useless items. Possibly write a poem or a short story. Cuddle behind my sleepy kids. Listen to their heart beats. Caress my husband.

Dance around my living room in the nude listening to funk music or classical rock. Or go for a late night walk/run. Explore internally & externally.

My life is now, preserving and utilizing my energy wisely. As a result, I hate looking around my home at dusty, dirty or dated things. Obviously we have outgrown this place. Too poor, or more optimistically speaking, too non rich to do anything about our circumstance. Feeling real pessimistic right now.

Yeah, we can get rid of a few things, which we do. But most of the clutter are: educational tools, sports gear, musical instruments, books, yarn, containers of writing material, over sized furniture which took practically a life time to pay off (bad investment decision), I digress.

Reason why I sat at my computer to blog in the first place is because, I'm constipated.

This has been a reoccurring theme since I've been on dialysis. Before, being a hater of spending lengthy hours in a bathroom, I'd wait until it's on the edge, go, plop, wipe, wash hands, spray, I'm done. Exit the smelly closet of a place hopefully to never see it again for another few hours.

Now, my life is spent sitting in a place where I don't want to be, waiting for a miracle to happen. Pushing and squeezing what feels like an full sized child from my anus. Which causes even more fatigue to the point, I need assistance getting off the toilet. I hate being dependent!

It's like my butt hole shrunk. I can remember when I was in the hospital, nurses would constantly inquire, "Mrs....have you made #2?". Out-of-it from the frontal lobe stroke and medications administered, I had no idea what they were talking about. Til this day I can't recall any bowel movements or urine. I couldn't walk, so did I go on a bed pan? Seems like I'd remember that! My well being was totally in someone else's hands, which remains bizarre to me.

The BM process causes me to moan and groan. My family knows what's happening by my wails. I feel so frustrated. If I take meds, softeners for this, the stools become too watery or loose for my taste. If I do nothing, I have to deal with moments like this until I get a kidney, I guess.

I try to decorate my bathroom in such a way that it is inviting or cozy. But it is too small. No windows, yuck. Cluttered. Non luxurious. Boring.

Plus, I randomly began looking up topics related to my disease in order to be a better informed patient. "How Dry Weight and Fluid Gain affects dialysis patients". "Fluid Control for Kidney Patients". What I see, is discouraging. All the side effects listed. Meanwhile, I'm thirsty. Already drank over my limit, possibly. Can't even finish a soup. Or eat fruit or jello because of the fluid. Damn! Moments like these are that 10% of the  time when I feel down.

Wish I had parents to call (as my overworked husband needs his rest) like my kids have us. They can call on us anytime, for as long as there is breath in our lungs, we'll be here, there, wherever, whenever. Life's challenges seem to cause me to lament not having supportive and present parents.

Saying goes, when you know better, you do better. Truly, some people are just not equipped to love, to parent. "I'm lovable. I'm worthy". My steadfast husband proved that. And to me, this is weakness on my part. Longing for something I cannot have. For something I never had. Seemingly ungrateful for what I do have, which is far from true. All this over bowels which are struggling to move. Silly.

If only I can have a normal bowel movement. The Renal Diet, and Fluid Restrictions seem to be the culprit. I'm still too ignorant to clarify in greater detail, but not being able to consume certain things and having a machine do the work your kidneys should causes certain side effects. Sigh.

I wonder who is still urinating at my dialysis unit. Is everyone having these exhausting bowel movements? By no means is this a "Whoe is me", but damn, I get tired. I'm human!