Welcome to Redefining Myself!

My inward journey to living a mindful and quality life

while living with NP-SLE, RRMS and CIDP

and their overlapping accessories.

Slapping the face of many things demyelinating.

Overlap Grrrls Blog

"An Unexamined Life is a Wasted Life."  ~ Socrates 









September 17, 2010

 Feeling the love from my Quincy ♥ Wives

this afternoon! Lots of girlie goodies! The actual sealed package smelled like frankincense!! :) Thanks my lovies for spoiling the petite riot gurl and I!! I already started reading the book- I was INSTANTLY hooked!


that is the riot power infused double digit FSU necklace ;)
Those round things, that look like washers are charms. One each says: Laugh, Prosperity, Strength, Survivor, Intellect, Patience, Spirit, Hope, and Success.


The thing that is so i
ronic about receiving this FSU charm necklace from my Best Grrrl Judy, is that just this Wednesday I put a charm on the Hope Bracelet bracelet, the exact replica of one of the charms on this very necklace: Strength!
When I got the charm for the necklace, I thought that it was too cool and thought about keeping it for myself and buying another! LOL

One last thing: when my sister H and I were younger, my dad had a workshop full of STUFF. He gave us each a washer and said, "Do you know what these are?!" We looked at him like he was nutz, "Daddy, they're washers!" He said, "NO these are very special things, called 'Round To Its'" He explained that he always gets around to it, gets things taken care of eventually.

IN FACT, when my Slavic grandmother passed away, my sister H was back home with Dad for her funeral, and my sister went into Dad's old workshop and grabbed me a Round To It, and brought it home for me and has been hanging on my Baltic sea amber rosary ever since.

My best Grrrl, Judy sent me a riot power infused double digit 'Round To It' charm necklace!!! Woo Hoo! ♥ ♥




The Overlap Grrrl Goes Cheek for Cheek with Steroids


                                      07/05/2010


Alas, I join the ranks of bloated, bitchy (FSU), tired, wired, and jittery patients. That I have the ability to poke fun at this roller coaster ride (that I didn't chose to go on) that has taken me hostage is a miracle in and of itself; humor saves me from otherwise folding like a lawn chair, or into a fetal position and wither away in a state of hopelessness. Don’t get me wrong I do have hours and sometimes days of being bummed out by it all. I’m not that spiritually evolved!


I’ve been on oral steroids (prednisone) for near four and a half years. Since January of this year, I have been blasted with three rounds of Solu-medrol (IV steroids) which have all been followed by oral tapers. My lupus fighter friend, Jayne, said to me earlier this year that while these medications are powerful and have side effects, they do help our bodies tremendously.


On the note of steroids, specifically IV steroids, I need to point out that of the seemingly permanent cosmetic effects to my gluteus maximus, stomach, and thighs and face. This type of body fat may be regarded as adorable and healthy looking on say, that of a 3 to 18 month old child. But, let me say that this bulk on a woman in her 40’s it is rather revolting as well as alarming! On several occasions, I have walked past mirrors naked, and have become startled as if a stranger were standing next to me. Most of my life, I had the muscular frame of a gymnast, but now it resembles layers of cottage cheese camouflaging muscles that now only play peek-a-boo.


Recently being awarded my SSI (Yay!), I went to a thrift store to buy clothing 2 sizes larger than I normally wear; for comfort and to actually have something other than PJ’s that I can fit into and wear out in public! My big sister friend Kathy of LupusMCTD, said to me, “Yeah, the steroids have puffed you a ‘bit, but look now you have boobies!” Girlfriends ALWAYS point out the good in every situation!


Lest I forget to mention the steroid induced, super-imposed munchies that surpass that of a pregnant woman. Many times I have had self-dialogue explaining to my stomach that it is not really hungry. That the steroids are talking. The bottomless pit
is a sensation that is slow to cognitively register the message, “OK, I am full.” Maybe the steroids have somehow shut that message in my brain off?? One night, in bottomless pit frenzy, I stuffed my palate with a full box of graham crackers, quickly followed by an entire cantaloupe and four plums. Upon awakening the next morning, I discovered to my consternation that my laxative/stool softer was working almost too well!


I cannot forget my companion insomnia of the last three years. This unannounced and unwanted visitor is unpredictable by its very nature. No matter what I have done to prepare for these spontaneous incidents, I still emerge feeling victimized by each encounter. How is it that during times of insomnia that I become so easily deluded into thinking that I think I have such an abundance of energy, thinking that I could accomplish something as productive as cleaning the house. Yet upon closer inspection, I end up being the foolish girl, glued to the TV screen (which I normally don’t ever watch) watching late night infomercials and devouring a box of graham crackers. Or thinking that I feel sharp enough to write an essay or article but discovering that I am quite literally unable to compose two comprehendible sentences. My late night edits have always turned out more revisions! My denial runs deep!


Are the steroids causing me mood swings, or are the neuro-psychiatric manifestations of both my illnesses ping ponging off the steroids? Talk about anxiety attacks and panic attack! For no apparent reason, there seems to be an internal inferno that appears to be at a constant simmer, always ready to boil over. Anxiety in crowded places has heightened to new levels. If there is too much external activity around me, I become overwhelmed and mentally feel overloaded. One of my MS fighter friend Kim calls this “mental overload and shut down” caused by too many external stimuli. My MS is a relentless tormentor that is currently requiring me monthly Solu-medrol infusions. I am starting a titration of Rebif therapy and waiting for my consultation at the MS clinic at the University of California, San Francisco. I am looking forward to meeting those cats down there!


Yet, none of this is in vain; none of these experiences is without a purpose! The mere act of my sharing through words will hold the attention of at least one other fighter. My candor will reach that one other person and become a vessel of confirmation. A source of comfort that smashes barriers of isolation, saying, “You are not alone!” We are not alone! I am not alone!”
God grant that it may always be so.


©Kim Nault


The Grief Process of an Overlap Grrrl (reality check!)
04/09/2010

Today, during my in home physical therapy visit I was rambling on about what my body used to be able to do, flexibility, strength, endurance, balance and an ex-gymnasts physique thank you very much! Muscle tone! Work horse! Used to be able go and move about for 14-16 hours a day!


Sitting there, doing knee raises with the easiest exercise elastic I got to thinking… about last month, three months ago, September’s MRI results, the imposture TIA’s of August and the coinciding commencement of having to use a cane. Last Spring I certainly fatigued easily and my strength had decreased, but I could walk! In December of last year I could sit upon the commode without swaying back and forth like a drunkard (and I used to drink for that effect and liked it?!).



I suspect that my ramblings and the possible dazed look must have initiated my physical therapist to interject, “That’s OK Kim.” She looked me square in the eye and very gently said, “That is how you used to be. That was you back then. This is you today, working those very same muscles with what you have today. The effect is the same; you are just using today’s body to do it.”


Surely, the Hand of God used this professional as an instrument to deliver that acknowledgement to me. With a certainty, she has heard and addressed many a patient while they drift down disability memory lane, vacillating in past memories while simultaneously bumbling into the raw state of current reality.


It was a light bulb moment for me, confirming that clever psychobabble quote (the dreaded, put skid marks in my underwear quote), ‘The Grief Process.’ The specific stage that comes to mind is the ‘Bargaining Stage.’ I finished my session and began to reflect on some of my recent thoughts and feelings over the last week. Then I recalled that two nights ago I dreamed about myself riding a mountain bike. WTF?! For the record, I do not normally dream about bicycling (unlike my Lupie mate, Geoff Thomas). I am a nocturnally induced spy, wherein Jackie Chan is my sidekick along with Chris Rock making me laugh myself awake. Upon recalling the dream I regarded its symbolism- duh, Grief Process stuff.


Earlier this morning while my brain function was at its peak, I worked on my SSI appeal (grrr...) until my head throbbed, and soon after I posted on my Facebook status, “Happy Friday everyone! Whew! Just exerted my energy quota for the day, am a grumpy 'over the log' bitch grrrl , and going back to sleep... Nos vemos por la tarde!”  I was wiped out. Tonight, in hindsight, I know the fatigue was emotional exhaustion, of the Grief Process Bargaining Stage type of exhaustion, but I could not see it at the time. I could not see that below my level of consciousness there had been (and maybe still is!) a cauldron of clamoring a brewing!


This awareness did not come to the surface until after God deemed my physical therapist and ad hoc psychologist to say those words to me at the kitchen table. Her words peeled back a layer to allow enough light in to shine on the truth. Her words helped edge me out of denial and pushed me toward acceptance. She was compassionate when she delivered her words. I rolled about my kitchen in my wheel chair begging God for guidance and strength. I worried, got angry, fretted and got pist. I prepared supper and was thinking and thinking about how all of the ‘Bargaining Process’ thought life had been manifesting. Truth is, that there are times when I’m very bummed out about my limitations and disabilities and I do drift back to thinking about how things used to be, such a short time ago. It does piss me off sometimes too. I freaking hate MS and SLE and what they have taken from me!


I keep summoning my faith in the God of my understanding along with my bitch grrrl courage to pull me through this mangling process of grief into acceptance. I do at times feel very much like poured out wine and broken bread. This process will take time and I have learned how, through many life experiences, to give time to time. Through my process of grief will come that inner freedom of acceptance, which I know to be a process and not an event. I will trudge with my eyes on that objective of acceptance, while being a broken person that is being made strong at her broken places.


©Kim Nault 04/09/2010


Poured out Wine and Broken Bread Overlap Grrrl 
                                     02/26/10


My inner journey to personhood thwarted by the apparent assaults that my body continues to undertake. When I am utterly fatigued and feel not fit for man or beast, I do not feel very inspired. Then when I try to think and my very thought process becomes as painful as trying to walk a distance without my mobility aids (Canadian crutches, Kim M!). Garbled thoughts, coupled with poor recall ability and patched words that collide, no reason, no continuity, just a mess of ideas whirling about in my head. Thoughts that rummage through my head, not connecting, stale and resemble the smell of mothballs from my Babci’s attic. Her items preserved by the mothballs intended purpose and from the moths scavenger effects; my brain just is not firing properly! This inconsistency puts a completely new meaning on brain fog. My cognitive process is being dwindled! In fact, at times the inconsistency is so sharp and piercing that I feel like I am babbling under water! My friend Angie calls it “balloon head thinking.” Thus, my lack of cognitive process renders me feeling useless and frailer then the vessel of a body that I lug.


Alas, there is my current battle for my body. Highly educated scientific types call the battle, auto-antigen cells. These cells are troops attacking and damaging parts of my central nervous system and brain, leaving lesions on my brain and spine in the aftermath. Each onslaught produces a series of issues in differing regions of my body. I never knew that the central nervous system controls virtually every part of your body! I am not a fast learner… Bowel and bladder, muscles, nerves that if spread out could cross the American continent, balance and gait deterioration, cognitive issues, extreme fatigue.


When my brain does not fire or produce the things that I know it is capable of producing I experience such frustration and despair. Honestly, when my mind is not sharp and swift I feel my worst. I have handled some ass kicking pain and have faced near organ failure, but not having my mental capacities on a consistent basis truly devastates me. I know of a few NP-SLE (neuropsychiatric lupus) who do concur with this statement. It may seem absurd to many, but not having a mind that can recall an event from 1 hour ago, or recall the name of a person that you just met 10 minutes ago, or not being able to write a simple thread to someone on Face Book, really confounds me.


Lately, I have taken to jotting a few lines in my notebook for future reference for future blogs that I want to write. These notes have sat there for almost two months… It is in my very nature to observe, mentally process ideas and then write. This has become a useful tool for me over the years, much like Jesus saying to his disciples, “Go then, and tell me what you have seen and heard.” It is my novice testimony to others, to identify myself as being poor in spirit, and one more glorious time, have the Good News told to me, at just the right time. How I was once again, blind and now see, how I was again, deaf and now hear. How I have many times and metaphorically, taken up my bed, rose from the dead and walk again. Then in turn, I can share the Good News with others.


I am reminded of Ram Dass, the famous American teacher of Middle Eastern Philosophy, was inwardly violent and angry with God, when he had his stroke. He was pissed off at God! The he began an inward journey of being ill, and recovering liberation of his thinking. Through his inner journey-process, his thinking reordered and he became spiritually liberated. (I do not curse God for my illness, though I have been known to curse a few New Age people who have the mental conviction that I have my illnesses for varying spiritual reasons. But, I will save that gripe for another essay.) My reordering has not been through a burning bush, or a pricey seminar, but rather piece mail, an educational variety of sorts. In increments, as obviously, that is all that I can personally handle.

©Kim Nault
02/26/10



NP-SLE or MS? The Neurological Challenges of an Overlap Girl 09/29/09


After a summer of increasingly bizarre, alarming and frustrating neurological signs and symptoms, I found myself in the ER, as I thought that I had been experiencing TIA's. No clots were detected on the CAT scan, which is good, right? Read on.

As it would turn out, the neuro issues ensued and I went to my PCP twice in 2 weeks. My PCP said that I had 'scattered neurological signs' and she talked about the possibility of me having either MS or CNS Lupus. My doctor warned me, “Many people’s MRI's are clean, and most take years to show something significant." I would go out for an MRI. I mused that my MRI would be clean and that I would fall into that population of uneventful MRI patients.


Last Sunday (yes, I did say Sunday!) at 8:15 AM, I was placed into the big MRI tube and had a bunch of pictures taken of my ethnically challenged skull. I was in and out in 15 minutes. A few hours later, we loaded the truck and headed off to Lake Tahoe.


Friday my PCP doc called with the results. She told me not to worry, that nowadays there are good treatments, and that this is not a death sentence. My interior dialogue, “What does she mean by not death sentence? Good treatments? Huh? What happened to the uneventful MRI population?” She said that there were white matter/lesions on my brain. I asked, "What part of my brain?" She responded, "All over your brain, Kim. It's all over your brain." WTF?!


She proceeded to tell me that she would to send me out to a neurologist so that they can do further testing, determine which disease it is, and begin treatment. She restated that this is not a death sentence, and that the treatments nowadays are much better than years ago. I asked her to RX me some medicine for the horrific nerve pain and tremors and some more medicine for my vertigo. I was at 10 mg of prednisone for my headaches. I also explained to her that the evil headaches have returned with a vengeance and if I could increase the dose to 20 mg. until I saw the neurologist.


Praise God that my sister was there when I got off the phone. I sure would not have wanted to be alone those first few hours after receiving news like that. I vented and cried. I cried and I vented. I got PISSED! 'F' Lupus! 'F' Auto-immunity! 'F' auto-antigen cells! I vacillated between shock and disgust.


I was SHOCKED and simultaneously feeling confirmed, that this was indeed, not all in my head, that it was not all fancied. Wait! It is literally, INSIDE my head! I have a traveling circus INSIDE my head! I have a traveling circus of lesions attacking various parts of my brain! WTF?!


I called intermediate family members and private messaged a few Lupus veterans to share the news. The shock and disgust of it all kept me awake until 6:00 AM Saturday morning. All night I wrote and worked on my new site and focused my energy into the positive, of helping others and spreading hope. Lots of prayer and service work always frees me. It unclogs those interior barriers and helps clear my mind. Do not get me wrong, there are still residuals of shock and disgust and a blatant scoffing at the disease on the interior of me. I am a trudging kind of girl.


I have some fears being kicked up too. Fear of economic insecurity, fear of losing my driver’s license, fear of becoming terribly disabled. My biggest fear: dying before my minor child reaches adulthood! I do not fear death, but the thought of leaving my minor child behind freaks me out. Almost ten years ago, I faced death with this very same child as a newborn in the forefront of my mind. This is my one and only major fears. Of course, it does not mean that I will actually die, but I have to admit to having these fears. Otherwise, I am being dishonest with myself. I pray about these fears as they crop up. Believe me, they do crop up.


I processed all through the weekend. Today I am calmer. Don’t get me wrong, I am still vacillating between emotions. Yet, the anger and disgust is melting and I have a great sense that God will provide, so long as I do the footwork. It occurred to me, that these lesions are in/on my brain, and that I have been carting them along for who knows how long. I will soon find out the exact cause and be on my way to precise treatment. I trust that God will make a way for me. His timing is always impeccable.


Over the last ten years, I have experienced some serious forms of inflammation on my vital organs, red blood cells by way of Hemolytic Anemia, idiopathic thrombocytopenic purpura (ITP), liver inflammation, kidney inflammation, hypertensive crisis, vasculitis and double pneumonia. Teetering on the edge of life and death can become a great motivator to self-awareness and personal development.


Some very wise people taught me years ago, that all of the experiences that I have had are indeed, preparations for me to walk through new events and obstacles. Those prior experiences have built me up on the inside. Those wise people would assure me that experiences have adequately strengthened me for this new phase in my life. I have been spiritually prepared to walk through this next series of events in my life. I have on my spiritual amour, and I am not without fear, as all warriors do experience apprehension and doubt prior to battle. My faith in the God of my own understanding is the only constant source of strength to whom; I can rely upon to steady me as I go along. In the words of St. Paul, “It is through Him that I live, move and have my being.” God grant that it may always be so.

                    


An Overlap Girls Pride Synchronizes with Karma
 May 13, 2009


Background:
I've been on weekly injections of Enbrel to treat RA for about a year now. RA has inflamed multiple joints and tendons in my body and has caused erosions in several of the effected joints. My rheumy wanted me on this two years ago, but my prior insurance co-pays were too outrageous.


During the last four years, I have experienced RA flares that have caused difficulty in walking. I've been too prideful to use a cane during those episodes. During those times, I'd make many accommodations in an effort to limit my walking distance, such as parking near the entrance/exits, limiting the amount of shopping and walking in larger stores such as Walmart and Target. Using the shopping carts as walkers. I also avoid shopping at the mall as walking any distance over half a block causes too much pain and wears me out. Not to mention the rude SOB's who get all huffy and almost knock me over because I can't hobble fast enough for them. grrr...


Over the years when visiting any of my doctors, I have always seen the DMV handicap parking plaque card applications on display. I even actually took one when I was at my cardiologists office two years ago, only to stuff into a junk drawer and never to see the light of day again. As a result of never filling out one of these handicap plaque applications I've caused myself and my loved one's a few problems~ of which I will elaborate on in a moment.


My pride has motivated a host of justifications and rationalizations, of why I haven't needed a handicap parking plaque:


"Well, I'm not that bad~ YET!"; "God always makes a close parking space available!"; " I'm not as out of breath as I use to be!"; "Just avoid going places that require you to walk a distance", "If I avoid situations that require me to walk a distance, then the problem does not exist", "My father has cardiomyopathy and CHF, HE really NEEDS a parking plaque more than me."


" I don't want people scowling at me!" The best one: "I'll get one when I really need one."


So, about a month and a half ago, my right ankle went from being a baby tooth ache to a wisdom tooth ache, it got WORSE! I could not bare weight on it at all!


Holy Mother of God, pray for my thick head, I was right smack in the middle of the store, leaning on my shopping cart walker (because I'm not that bad~ yet) trying to take a simple step, and ZAP! I could not step down, could not walk. Damn it, all I needed was a few things, which of course were on opposite sides of the store. I was stoic, I did not cry in frustration. Nope did not bat a single tear. Instead, I got PIST! Then I turned into a bitch. It took about an hour to get out of that store, taking a few wobbly steps, pausing, taking a few steps, ZAP, excruciating pain, and a nice big fat bitchy attitude driving me the entire way.


I got into the car, and the mere act of flexing and pointing my foot to drive was yet, another journey of wrenching pain. Then! My thoughts raced in fear of the " What if?!" list: Fears of not being able to work. Not being able to work = no rent, no utilities, no shoes, no cat litter, no toilet paper! Not being able to drive = meant no WORK! How on God's green Earth would I bring my daughter to school? How would I get to doctor’s appointments, the pharmacy, or the grocery store? Oh hell, if I couldn't work then I'd have to move IN with my ex husband! The horror!


Over the span of a month and a half and two ankle braces later, my pride has lead the procession of "it's not that bad~ yet." Since then I have continued to rationalize my “not-that-bad-yet” limitations. Until Monday afternoon, when my belligerent denial and unwillingness to bring quality into my own life, came back to slap me in the face with a huge dose of facts rooted in pride.


Monday was a bad ankle day. After picking up my nine-year-old daughter from school, I drove over to Blockbuster to drop off a few DVD's that we rented. ALL the parking spots in front of the store occupied, so I pulled my car into the handicap hatch/wheel chair access, and had my daughter put the DVD's into the drop slot, while I sat in the idling car. This took all but 30 seconds. As I began to back out of the space, the terminator meter maid came zooming into a space next to me. I spied that she was writing my plate number on the palm of her hand. I rolled my window down and asked if she was writing me a ticket. In a US postal customer service tone of voice she replied, "Yes, I am."


Well, I was aghast! I sat there beckoning the sky and the very Hand of God Himself, "Is this a message to me?!" Of all things, a lupus patient advocate, getting a parking ticket for parking in the hatch space of a handicap parking spot! Miss Kim, the patient who encourages others to be proactive. Miss Kim, the wobbling patient who NEEDS the damn handicap plaque and DOES NOT have one BECAUSE it is NOT BAD ENOUGH- YET! HELLO! I babbled my thoughts aloud as the terminator keyed the ticket on her snazzy blackberry. I am certain that they have to meet quotas. When she handed me the ticket, I handed her a business card for the site where I volunteer. I was upset, to say the least, and mostly at myself.


I immediately called my friend Kathy upon returning home, and she said, "Kimmy, do you think that the universe is trying to tell you something? Do you think that it's time for you to get a handicap plaque?" Duh...


It is a four hundred dollar ticket!


I went online to inquire about a parking fine waiver, and printed out a waiver application and one of the questions it asks is "Are you disabled?" duh. I will probably qualify for the fine waiver, because my daughter and I are on state health insurance, and our income is low.


My state of unwillingness, rooted in pride has compounded my denial and obviously (duh) takes its toll on my body and caused me to be fined for illegally using the damn handicap spot that I am actually eligible for!


Just tonight, my middle sister (who wants to be smarter than me) scolded me for having to have watch me struggle with my physical limitations over the last few years. She said that she has watched me being prideful and that by not accepting my limitations I am causing more damage to my body. She has had to watch me in bitchy and in pain with struggling to walk .That during these times she has had to bite her tongue with me because she did not want to add fuel to the fire. Then she said that this situation should be a message that I, yet again, have to make yet another accommodation in my life to improve the quality of my life. She used one of my quotes on me!


My dear family, friends and fellow patients, this journey of pride and obstinacy has been beneficial for me. I will admit that I need a handicap plaque. I'm not happy about the needing it part, but I'm positive that with time I will accept it, and be grateful for it on days where I'm just fried. I will get a cane for bad days, and as I promised Tesa, that if my rheumy wants to send me to a physical therapist, I will say "Yes, sir."


I have said this many times, and I will say it again. Acceptance is a journey not an event.


©Kim Nault
"And that's all I got to say about that..."

Page last modified on July 5, 2010