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.

Sunday, July 31, 2011

The Disabled Lady with a Walker Saves the Pitt-bull Family from Stupidity and Mayhem

“Empowerment is the result of external sources inspiring us inwardly."
©2010 Kim Nault



July 27, 2011
I recently received a few public service recognition's that I would like to share with you: 


Judy M. : "Kim a.k.a. Blockhead will now be addressed as THE PITBULL WHISPERER. For her courageous Mc Guyver esque
plan to deal with neighborhood pitbulls. FSU"



Image courtesy of SNL


Shannon SNL: "Where's our el pollo loco?  we saw what a great deed you did lil lady your our hero and that little pretty girl with the natty dreads :) keeping our neighborhood safe! woof, woof, yap"




Now I'll share the back ground story that lead up to these words of appreciation.   


The Disabled Lady with a Walker Saves the Pitt-bull Family from Stupidity and Mayhem
(do not attempt this without chicken)


A week ago I was in my front yard weeding. I weed and prune for therapeutic reasons. While the activity keeps my limbs moving and helps me keep some range of motion, this meditative activity always stimulates my creative juices.  While I was sitting upon my buttocks, with garden sheers in my wobbly hands, I heard my next door neighbors yelling and a bunch of dogs barking. I grabbed a hold of my walker, stood up and walked toward the end of my driveway when two Pitt-bulls came charging at me. My neighbors, who were behind the safety of their four foot chain link fence, were quite wound up and hollering for the dogs to go home. 
I threatened to punch the F'n dogs in the head if they came near me. 


Once the dogs left my yard I rolled my walker over to my hose and turned it on full blast to use as a weapon of sorts. I hollered to my daughter to get my car key chain and hit the panic button if the dogs came back. Well, the dogs did come back, I hollered for Dom to hit the panic button, the beeping horn scared the Momma dog off and the six month old daughter charged me and I sprayed her full blast in the face with  the hose. Well, the water stopped her from charging me but she liked being sprayed and thought it a game of play.


I rolled over to my neighbors (who are not disabled, and are chicken shits- one was even a man!) who were hiding behind their fence. I learned that these three dogs belonged to our neighbor across the street. Evidently, the gardener had left the gate open after he left and the dogs were running loose through the neighborhood. The Momma and daughter dogs were charging after people on bikes, barking at cars, and running up and down the block. The daddy dog, who weighs probably over a 100 pounds, just nonchalantly walked marking his territory about the hood, followed by an occassional delayed response bark to his girls. 


I scoped the situation out. 


I observed the personalities of each dog and determined that the father and daughter dogs were mellow personalities. The Momma dog was mostly a loud mouth, BUT she could potentially bite me if threatened. 
I asked the neighbors if they would help me if I wrangled the dogs to their yard. They all stood there  speechless, and I said, "That's just great. Here I am , with a freakin walker, I can't run and I AM willing to get these dogs in their yard, and you CAN run and you CAN walk, but you won't help me with these dogs. That's just great. Don't you worry I got it all under control."


While rolling my walker back to my yard, a spontaneous thought crossed my mind. I can't roll my walker over to that yard, the dogs might bite me. I can't run. BUT! I have a car! I noticed that the dogs had run out of a double wide gate and I decided that I could drive, (safely in my car) my car into that freakin yard! I just needed an assistant.  

I yelled to my daughter to, "Get  my car keys and the Tupperware container in the fridge with the left-over chicken! We're going for four-wheel driving in the neighbors yard!" 


My daughter was wide eyed, wondering what the hell her mother was up to. 


We got into the car, I driving and my daughter riding shotgun with the tupperware container full of chicken. As I backed out of the driveway, all three dogs charged my car, and the neighbors next door stood watching and wondering what the hell that dilapidated broad is up to... 


I hit the power button to my assistants window, and hollered in a very sarcastic voice to my chicken shit neighbors, "Don't worry! I got it all under control! I'm going to wrangle the dogs into their yard, BUT! I may need help closing the gate! Will you help me?" The husband, white as a ghost, stood speechless behind his fence. 


I told my daughter to break the chicken into pieces, that we were going to bait the dogs into their yard. I slowly drove through the gate, as we both threw chicken pieces to the daddy dog. Daddy and daughter dogs ran into the yard, and my daughter hurled the chicken pieces further into the yard. Both dogs went to retrieve the chicken, and I backed out of the yard slowly, and baited Momma dog with some delicious grilled chicken. Once momma dog entered the yard, I blocked the gate with my car and got out of the car to close the gate. I was hollering to my neighbors to help me latch the gate, as I couldn't reach over the fence to do it.


The dogs were pounding on the other side of the gate, as I held it closed. The wife neighbor came running over and I told her to get up on the hood of my car to latch the back side of the gate. Well, the latch was completely broken so we couldn't secure the gate. I asked my neighbors son to run over to my yard and get the nylon rope out of my back yard. He came back with the rope and I tied the to gate doors together and anchored the rope onto a large garbage can.     

Oh, the husband came out of his yard after the dogs were behind their gate. Moral to this story, if the disabled broad asks you for help, no doubt she's got a plan and it will go smoothly if you assist. I told my neighbors, "Oh, by the way, I'm from Boston."


FSU







July 22, 2011


My youngest sister writes: "Tell papa we need oxygen here in MA, as in baggett quanities ;) or we are going down ;)"


My response: "Babe, papa can't share his O2 'cuz his O saturation have been running about 91-92. He neither confirms nor denies the consumption of baguettes (you use your imagination...) However, papa reported this morning that the piles of 'crap,' I mean paperwork & 3 ring binders in his office, are now at hazardous proportions. I suggested that he wear a hard hat & protective eye wear & to call the Haz-mat folks. Papa, however said Life Alert would suffice. I'm taking bets (don't tell him though) that he trips entering his office as he balances a foot long baguette sandwich while traversing (knees into the mountain!! Skier joke) his piles of crap. Sis, stay on alert, this could be dangerous. Children do not attempt this at home." 




July 21, 2011
Going for a brain MRI this afternoon. Gonna see what the traveling circus of evil marshmallows are up to. For the record: those marshmallows suck pond water. Peace out




More Family Humor
July, 16,2011


One day my Mum & her elderly parents went to the nursing home to visit her paternal Micmac Indian grandmother. My then 79 year old grandfather turns to his 96 year old Mother and says,"Ma, why don't you tell Pammy (my Mum) about the Group Circle." 


My great grandmother huffs, " For christsake, last week the staff call all us residents downstairs for a 'group circle meeting'. The staff person has us all sit in a circle, and she pipes up, 'Today, we're gonna talk about what you used to do for careers when you were younger'." 


My perturbed great grandmother continues, "I couldn't believe the discussion. For cripesake, I was a housewife. I didn't have a profession. As everyone in the circle takes their turn, I get to thinking, I'll frost their ass for asking me, a 96 years old woman what her profession used to be.


" The staff lady asks my great grandmother, "So Liz, it's your turn. Would you like to share with the group what your career used to be?". My great grandmother states, "Yeah, I used to be a prostitute." My great grandmother said to my Mum, "I guess I showed that girl.". (True Story)!






More Stories from Papa Moose's Traveling Show
July 15, 2011


My Papa Moose is a general contractor. For the last several years he has been 
managing construction projects. This week he went to meet with an architect regarding a new hospice building. During the meeting my father says...
‎"Ah great, a hospice building. I'll probably be the one to use the first bed." LMAO. Well, like Papa Moose now says, " I used to be full of piss & vinegar. Now I'm just full of piss.". Speaking of piss, Papa did you take your bedtime lasix?! We're chronically ill but we haven't lost our witty Nault edge. Peace out & Namaste Mofo's.






July 13, 2011
The pharmacy tech (note: not all tech's are new kids on the block) just called about our insurance not covering my daughter's RX for amicar. I asked her if it required a prior-authorization & well, she hadn't considered that (hear the sound of Crickets in the background?) Then the tech says,"OMG, it's like, over $200 a month for 30 pills!" (More crickets). . .
Yep, your cheeky bitch grrrl, firmly but appropriately states," 200 bucks is nothing compared to the price of a blood transfussion & a hospitalization. My kid has a bleeding disorder, not a headache. I suggest that you contact her hematologist for the prior authorization. Thank you for your help." Stupid people annoy the shit out of me. Thank you for flying Mummy airlines.






July 9,2011
My petite riot goth grrrl, the young artist made this the other day ♥




Auntie Judy said: "Wow Dom is sooo talented. Reminds me of our DIY fanzine days. You are such a gift in her life (and of course she in yours). Xo" 








July 2, 2011
Monterey Bay Aquarium 
We did go to the aquarium- it was wonderful! Dominique was mesmerized with the tanks & variety species & she said, "Oh this is like heaven!". Awww






PaPa MoOSe SiCk HuMoR:



June 29,2011
His gigantic weekly pill box is called 'The Ammunition Box'. 

Do you have your ammo box packed??








June  13, 2011
Today Papa Moose left me a voice message, "Hi Kimmy, it's uh, me, uh... What was my name? Oh! Uh, it's Dad." Click. SNORT! LOL. I returned his call mentioning that he had a brain fog. He said, "No, it was a senior moment." I said, "Oh, you mean a CRAFT moment?" Papa Moose asked what a CRAFT was. . 
I said that it was an acronym for can't remember an F'n thing. He concurred. LOL.






June 16, 2011
I have teetered on the edge of kidney failure & liver failure, and had my legs become paralyzed & had to teach myself to walk again. In light of all my real health crap, how the hell is it that oral thrush can make want my Mummy?! LOL it's funny but not funny. This shit hurts! I think that I'd rather give birth to a bowling ball. LOL 




June 13, 2011
I love my Riot Hag stage diving steel toed engineer boot wearin' Ho Ho Ho poetry slammin' networking female empowering snapping my mental carrot old school punk rock We are 138 sweetest purtiest emotionally loyal bestest in the wHOle wide world grrrl. Forevah 
♥ I'm a blessed bitch. Aho!




June 10, 2011

When I was a young one my little Mohawk grandmother would point her finger at me and say, "You are a BOLD child." Not much has changed...


June 8,2011
Bitch grrrls buried but infamous desk at new house. I wrote & edited my first 'zine on that desk 26 years ago. I'll be cremated with that desk. Feeling cheeky. FSU.
I will be on the couch for a month, please leave a message after the beep.






May 9, 2011
On any given day you might feel better or worse. 
The important thing is that you're on the right side of the turf.











Myelitis Mistaken for Bladder Infection in SLE; Immediate High-Dose IV Steroids Prevents Paraplegia

Friday, July 23, 2010 - Elsevier Global Medical News (this is from last year but very informative)
By M. Alexander Otto

VANCOUVER (EGMN) – Fever and urinary retention without obstruction in a patient with active systemic lupus erythematosus should be considered a medical emergency and treated immediately with high-dose intravenous corticosteroids, according to recent findings from Johns Hopkins University.

Those signs signal gray matter myelitis and spinal cord ischemia, and high-dose corticosteroids can prevent a cord infarct and permanent paraplegia, Dr. Michelle Petri said at the International Congress on Systemic Lupus Erythematosus.

Rheumatologists at the school have identified two previously unrecognized forms of myelitis in SLE patients: gray matter myelitis and white matter myelitis.

Both are longitudinal and likely to span three vertebral segments; the nomenclature refers to the type of spinal cord tissue affected.

Gray matter myelitis leads to rapid onset of permanent paraplegia and urinary incontinence in as little as 4 hours. Because it usually presents with acute urinary retention, it is often misdiagnosed and mistreated as a bladder infection.

But the “patient is announcing ischemia of the spinal cord and needs high-dose corticosteroids and to be admitted,” said Dr. Petri, professor of rheumatology and director of the lupus center at Johns Hopkins in Baltimore.

If the syndrome – and how to treat it – were more widely recognized, “hundreds of young women would be saved from permanent paralysis,” she said.

“When you have to place a catheter because the patient cannot urinate, treatment [with 1,000 mg IV methylprednisolone] should start,” Dr. Julius Birnbaum, the lead investigator on the project and a rheumatologist and neurologist at Johns Hopkins, said in an interview after the conference.

“The overall message is, don’t wait to provide treatment,” he said.

Gray matter myelitis, which the team considers a vasculopathy, presents with lower motor neuron signs: flaccidity and hyporeflexia, in addition to urinary retention and fever (Arthritis Rheum. 2009;60:3,378-87).

On the other hand, white matter myelitis presents with upper motor neuron signs: hyperreflexia and spasticity. The onset is more gradual, antigravity strength is more likely to be preserved; attacks are less severe; and disability comes from repeated episodes that eventually lead to paralysis, in some cases. It is more likely an antibody-driven phenomenon; white matter myelitis shares features with neuromyelitis optica, Dr. Birnbaum said.

High-dose IV methylprednisolone is used to treat both forms of myelitis. Following that, patients at Hopkins are placed on steroid-sparing immunosuppressive regimens, which may include azathioprine, mycophenolate mofetil, or rituximab.

Both forms of SLE myelitis are unlike myelitis that is seen in multiple sclerosis (MS) patients, which tends to be transverse and does not cause the rapid devastation that is seen in gray matter myelitis.

Currently, however, myelitis in SLE and MS patients is often lumped together under the rubric of “lupoid sclerosis,” Dr. Birnbaum said.

"That’s a mistake", he said.

Under no circumstances should any of these patients be exposed to the armamentarium used to treat MS. Lupoid sclerosis does not exist for these SLE patients,” he said.

Interferon, a mainstay of MS treatment, “causes flares and can lead to catastrophic worsening of SLE and SLE CNS disease,” Dr. Birnbaum said.

The findings are based on a record review of 22 SLE patients who presented with myelitis to the lupus center or transverse myelitis center at Hopkins in 1994-2007.

Dr. Birnbaum and his colleagues recognized the syndromes through an analysis of histories, physical exams, lab values, follow-up care, and MRIs.

The team discovered that 11 patients had gray matter myelitis, and 11 had white matter myelitis. There were no statistically significant differences between the two groups with regard to age, sex, or ethnicity. Most were women.

Of the 11 patients with gray matter myelitis, 10 presented for urinary retention. Because of the presence of fevers, “all of these patients were unfortunately and erroneously diagnosed as having urinary tract infections. By the time immunosuppressive treatment was initiated, there had likely already been irreversible injury,” according to the study report.

Patients with gray matter myelitis, compared with those with white matter myelitis, had higher median white blood cell counts (385.5 cells/mL vs. 10 cells/mL; P less than .01); higher median neutrophilic pleocytosis (71% neutrophilia vs. 15% neutrophilia; P less than .08); higher median total protein levels (254 mg/dL vs. 57 mg/dL; P less than .01); and lower central spinal fluid glucose levels (33 mg/dL vs. 54 mg/dL; P less than .02), according to the study report.

Cerebrospinal fluid profiles in gray matter myelitis were indistinguishable from bacterial meningitis, although none of the patients had meningeal signs or positive bacterial, viral, or fungal cultures.

There may be situations in different emergency departments in which obtaining an MRI is not feasible, Dr. Birnbaum said. “In this context, the spinal tap can support evidence of gray matter myelitis.”

He added that in cases in which the differential includes both meningitis and myelitis, concomitant administration of corticosteroids and antibiotics is appropriate. Both are commonly administered for worsening TB meningitis in order to simultaneously eliminate the infection and quiet the cytokine storm it produces.

In all, 12 MRIs were available for patients with gray matter myelitis, and 23 for patients with white matter myelitis.

Cord swelling was seen in 91.7% (11) of the gray matter MRIs and in 21.7% (5) of the white matter images; postgadolinium enhancement was seen in 25% (3) of the gray matter MRIs and in 42.9% (10) of white matter images.

Asked to review the study, Dr. Leonard Calabrese, section head of the Cleveland Clinic’s department of rheumatologic and immunologic disease, said that he thought it both important and elegant.

“The paper did a service in making [myelitis in SLE patients] a more heterogeneous presentation,” he said, noting that it was unclear whether gray and white matter myelitis were two different diseases or different manifestations of a single disease entity, and that the determination would require pathology studies.

Based on the new awareness of gray matter and white matter myelitis, an SLE patient who recently presented at Johns Hopkins with urinary retention and incipient onset of weakness was immediately treated with high-dose steroids, Dr. Birnbaum said.

At discharge, she had weakness in her lower extremities but still had antigravity strength, and she was able to walk.

Dr. Birnbaum, Dr. Petri, and Dr. Calabrese said they had no relevant disclosures. The study was funded by Dr. Birnbaum’s U.S. National Institutes of Health K12 career development grant.

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Saturday, July 30, 2011

Welcome

Welcome to Redefining Myself with Lupus and MS This blog page is a part of my commitment to educating, encouraging and empowering others who are living with these chronic illnesses, of which there is no cure. The enteries that you will find here will be from my personal experience, some hilarious, some bitching, but always packing a punch of witty determination. The Internet is revealing itself to be a powerful tool in people's lives. Networking with other patients has become a bright spot in my life and does add to my state of well-being ~ along with all the medications that I take. Living with an invisible illness sucks, but living with an undiagnosed and untreated illness, really sucks. Keep fighting, Kim Hope is an inside job… The steps taken to gain and maintain the state of hopefulness is perhaps at times more painstaking than the exertion and discipline that it takes to train and prepare for a major sporting competition. Hope is not an emotion. Hope is sprung from the very opposite of which it is. Hope is a state of mind and being, that even small voice, from within, that says, “Tomorrow will be better. Things will work out. Keep moving forward.” Hope is a direct result of determination and perseverance. Hope is a gift of the human spirit. Hope gives birth to a new idea, opens doors and has the very power to influence minds and change lives. © Kim Nault 09/30/09