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Kwiecinski Syndrome: Help for Karen (Nesoff) Kwiecinski

"Our girl is sick...". All I can think of is Aurora telling Rosie that in Terms of Endearment. Not because I think death is coming, but because of the word "our". Our girl. That's how I think of Karen. She's everyone's girl. I thought I knew a lot of people, but I bet when it comes down to it, she blows me out of the water. She's just that kind of person who is outgoing and fun, and people just want to be around her. I know because I've known her for over thirty-five years. People just gravitate to her and always have. Most of the boys I liked in elementary school liked her. In my mind it was that she had bigger boobs, but really it was more. It's who she is as a person. We don't need to see or speak to each other for years but the second we talk again, it's like no time has past. And she's always the same, genuine person who I've seen do so much for others.

When I think back, I have so many memories with her. We practically lived at each other's homes as kids. We fought like sisters. We tried make-up together at the mall. She looked better and her sister's friend told me I looked like a clown. Something extremely traumatic happened to me when I was nine. The first place I ran to was her house. Her parents were away but she was ready to just let me stay indefinitely. We would steal her mom's eyeliner so I could draw freckles on me like Karen had. She was over for dinner on a Saturday night when my parents ritualistically ordered Chinese from (the now defunct) Hong Hing. I'll never forget her calling her parents excitedly to tell them how she had her first spare rib. She loved it! Bob and Sandy- not so much. Pig wasn't on the menu at the Nesoff house. Oops.

We went on our separate paths over time only to be pulled back together for this event or that. Two reunions, deaths, etc. But we were always the kind of friends who could catch up for hours. While planning our 20th reunion, somehow it ended up being just Karen and I, instead of a "committee", for most of it. It was fine. One night, she called me at midnight or so. My husband was sleeping. My phone was about to die. So I'm laying in our third bedroom, which I basically made into a closet, under my vanity table, tethered to my plugged in cell phone. I guess my talking woke up B, he came in to what looked very suspect- his wife on the phone, in the dark, under a table, at one o'clock in the morning. He asked who I was talking to. I said- "Nesoff!". Yeah, for the first time ever, he checked my phone the next day to see if I was telling the truth. (I was!)

Karen & my mom at my Sweet 16.

When my mom passed away in 2009, she just showed up. A lot of people showed up for the memorial service and funeral. But she really showed up. She dealt with all the food for the shiva and just hung around as much as she could. I'll never forget that. Then I saw her at the funeral of another mom of a classmate a few years later. You can just always count on Karen to be there for anyone who seems to be in need. When I think of her, I just think of someone who is always willing. Not that many people are that willing. When I found out what was going on with her, the first thing I thought is that there HAS to be a ton of people who feel the same way I do. That feel like they would want to help her in any way they can and return some of the numerous favors she's given over the years.

Months ago I begged her to let me set up a fund for her. I was on my way to a mammogram and I was relentless with texts. It took her three or four months for her to agree. She just isn't accustomed to accepting or asking for help. Finally, at her breaking point, she relented and here I am.

She wrote her story for me- It's partially in a timeline/journal form and part like just telling me her story. I'm leaving it mostly as is, and it gives more of an in-depth explanation of what has gone on over the past year and where she is now. Reading it really just brought tears to my eyes. No one should have to go through something so horrific. Well, there are some people....but I won't go there.

So let's help our girl....

If you don't want to read the gory details and just want to donate: http://www.gofundme.com/helpkarenk


Karen's Story:

It began on Monday, November 17^th, 2014:

I was moving some things around in my house. All of a sudden I felt a pain in my upper back. I just assumed that I pulled a muscle, so I put a heating pad on it and rested on the couch. As I slept that night, the pain rapidly spread throughout my entire upper back. The following day (Tuesday), the pain continued to progressively spread. I’m not one to run to the doctor, but I knew something wasn’t right. So I figured if the pain continued I would go the following day.

Wednesday morning I woke up and the pain had spread through my entire body. I called the doctor and was able to get in to see him that day. He had no idea what the problem was, and could only assume that I had acquired some sort of virus. He gave me an antibiotic and some anti-inflammatory pills and told me to follow up with him in about a week.

For the next few days I basically just laid in bed crying. None of the meds that the doctor prescribed for me were helping yet, and the pain was getting worse and not missing an inch of my body. My husband had asked me several times if I wanted to go to the ER, but I just didn’t know what to do. So finally on Friday afternoon I called him at work and told it was time I went. He took me to St. Joe’s Hospital in Wayne because it was close. We spent several hours in the emergency room and the only determination was that my vitals were way off. My blood pressure was very low and my resting heart rate was very high. They gave me dilaudid through IV for the pain, and strongly recommended that they admit me in order to determine why my vitals were so off. Well, after one night of unbearable pain in the hospital, the attending physician had no answers for us and told us that there was no reason for me to stay any longer since they couldn’t do anything for me.

I visited my doctor again the following two Mondays in a row, actually having my parents drive me because I was just in that much pain. So after this third week my doctor told me that it’s time for me to go to a specialist because this was going on too long and was getting beyond his expertise (being that he’s a general practitioner). I got a few recommendations for rheumatologists, and most had a 4 month waiting period. I was able to contact one practice that let me explain my situation, and within an hour the assistant called me back telling me that one of the doctors heard my story and would be able to see me that same afternoon, which was a miracle.

December 10th, 2014:

I got to the appointment and he found that my resting heart rate was 122. He was extremely concerned so he did an EKG and some other tests, and told me he may want me to go to the ER for a cat scan. I was getting scared. I got to the ER at Valley Hospital again. They brought me in for the cat scan and by the time I came through the end of the tube, the rheumatologist was standing at the foot of the machine. I mean, this guy just met me that day and dropped everything to help save my life.

The results of the cat scan showed that I had pericarditis, which means that I had fluid around my heart. All of the doctors were still leaning towards the idea that this started from a virus. However, there was still no way to find out how I got the virus. I wasn’t contagious, but it seemed to just be attacking my immune system.

After many tests and 4 days in the hospital, I was free to go. All of the cardiac tests showed that my heart was in perfect shape, so it was an enigma as to why I had fluid around my heart. They were able to reduce the fluid around my heart to a normal amount before they released me.

January, 2015:

I went home for 2 weeks and still I was feeling horrible, from head to toe. I had seen the rheumatologist several times by now, and still they couldn’t figure out what was wrong with me. They had contacted other doctors and were collaborating with each other, but even together they couldn’t figure it out.

My rheumatologist had done some deep research and had finally found an interventional cardiologist. I had no idea what that meant, actually I’m still not sure I fully understand. But I was like their dream patient…my case was an enigma to all of them. Still nobody could figure out what was wrong with me.

I met with a cardiologist at this point. My doctors had recommended that I see a cardiologist because of the pericarditis. He told me that my heart was probably the strongest organ in my body, but once he saw what was happening with my hands, he personally contacted my rheumatologist, who now wanted to see me the next day.

So I went to see him the following day and he put me back in the hospital. This time I visited him on a Wednesday and he scheduled me to come in on Saturday morning through the ER. And yet another co-pay.

January 17^th, 2015:

I spent a couple of hours in the morning there in the ER and was moved to the ICU for an IV treatment called Iloprost. It was supposed to help stop the progression of whatever this was. The average duration of this particular treatment was normally 3-10 days. I was hoping for the 3 of course. So I spent several days with an unbelievable amount of doctors visiting me, a toilet in my bedroom like a jail cell and a nurse with an office in my room, for 10 days. I didn’t even care about lack of privacy at this point, I was just in so much pain.

During that time I was consistently receiving the IV Iloprost treatment, about 1000 mg of IV prednisone per day, anti-nausea meds (Zofran) through IV as well as Dilaudid through the 6 minute push button for pain. At least it helped me sleep.

Probably one of the most significant and horrifying changes happened while I was in the hospital during this 10 day visit…

The only way to describe it is it was like a nightmare. I laid in a hospital bed, with doctors and nurses surrounding me constantly, and literally watched my fingers turn black in front of my eyes. I was actually watching the necrosis creep around my fingers by the minute, and there was nothing I could do to stop it. Or the doctors. They continued all of my IV treatments and upped dosages to do everything in their power to stop the progress. But nothing was working. I cant explain the feeling of watching your fingers die in front of you and having no control over it whatsoever. Horrifying doesn’t even begin to explain it.

One of the nurses actually told me that the doctors were so baffled with my case that they were referring to it as “The Kwiecinski Syndrome”, because there was no name for it. They’ve just never seen this happen before, and especially so quickly. I always wanted to be famous, but not this way.

So they continued to try everything possible to help me. What an amazing crew these guys were. And they only met each other because of my case. But I felt I had the best team because they really cared. They were doing everything in their power and knowledge to heal me.

While I was in the ICU, I was taken for all sorts of tests, including a couple of MRI’s. I needed to have a bilateral hand and arm MRI but because of the contrast, they couldn’t do both sides at once.

The day after I went for my first MRI, I had my first major surgery a Thoracic Sympathectomy. Essentially what they did was laproscopically went in near both of my armpits, 2 holes on each side. Once they were in they collapsed my lungs so they were able to cut some nerves in order to open some blood vessels. The only side effect would be the change of where my sweat glands were. Since the surgery, I no longer sweat on my head, but mostly on my stomach and back. This was one of the side effects that my husband and I laughed at because I always sweated anyway, what was one or two more places?

So finally after 10 days in the ICU, I was set free (finally on January 26^th). But only for a short time. My fingers were still getting necrotic and the doctors had outpatient treatments for me to go to.

In addition to all of the treatments these doctors were trying, they had given me an unbelievable amount of medications to take at home. The cocktail of meds they put me on was because they just didn’t know how to stop the progression, and wanted to try everything possible to open my blood vessels. I was taking pills 4 times a day, including 17 pills in the morning alone. I mean I was taking everything from cholesterol medication (even though I don’t have high cholesterol) to Viagra (and I don’t have Erectile Dysfunction)! I laughed at all of the years I had received and deleted email offers for Viagra. All of these medications have secondary purposes, and my doctors wanted to try anything to stop the necrosis from progressing even further. Now insurance wont cover the costs of Viagra for a female. It is only to be prescribed for a male for Erectile Dysfunction. They don’t care about it being prescribed to try to open blood vessels. So there went another hundred bucks per month. Luckily, I was allowed to stop taking them after only a couple of months. In addition to the oral medications, I had to get a shot (blood thinner) 1-2 times every day, and I’ve never been a big fan of needles to begin with. I have been working closely with a pain management group in order to relieve the pain, but also be able to function.

February 6^th, 2015:

The rheumatologist set me up to go to Weil Cornell/New York Presbyterian on a Friday night. He had spoken with a colleague of his at the hospital and I was to go in through the ER and they would admit me through there. He thought these doctors may have known more about my condition than my doctors could figure out, so anything was worth a shot at this point. Unfortunately, the hospital was so over capacity that there were beds in the ER hallways, one of which is what they gave me. There was not one bed available in the hospital for them to admit me. After several hours I noticed one open room and being that I’m not shy, I asked if I could get into that room instead of laying in the middle of the hallway. Finally, after several more hours, a small team of doctors came in to see me. They did a Doppler check (a small machine that is able to detect a heartbeat on hard to hear areas) on my hands/fingers and feet/toes. Although they weren’t able to hear the heartbeat clearly on a few of my fingers, they simply had nowhere to put me in the hospital, so they sent me home early Saturday morning with no more knowledge or relief than I went there with.

February 10th, 2015:

I went back in to Valley Hospital. The doctors wanted to try one more round of Iloprost to try to stop the progression, since nothing seemed to working. By now, most of my fingertips had become black and some were as hard as a rock.

In addition to the Iloprost and 1000 mg of Prednisone through IV each day, there was another treatment that they wanted to try to help stop the progression…Chemotherapy. But there were two choices. The first could put me in early menopause, and we weren’t ready to have them make that decision for us. So I chose the second chemo, which was called Rituxan. They figured they’d do the first round while I was in the hospital in case any allergic reaction occurred. They started that Wednesday night (February 11^th) and the rest of the treatments were to be done at an infusion center.

I went for 4 weeks, once a week, for treatment. Basically I sat in a chair for 4 hours every Thursday from 9-1 and received, through IV, a round of Prednisone (steroid), Zofran (to stop any nausea) and Benadryl (in case of any allergic reaction), and then the chemo. Luckily the Benadryl would knock me out so I’d sleep through most of the treatment. Unfortunately, the next few days were always hell.

I felt extremely wiped out the entire day of treatment. Then every Friday, Saturday and Sunday I felt nauseous and completely exhausted, typical chemo side effects (or so I had read). I couldn’t do much but lay on my couch and sleep to feel better.

Finally the chemo ended and it seemed to have stopped the progression of the necrosis. What had already become necrotic was awful and apparently couldn’t be reversed, but at least it was no longer continuing to progress.

But I still wasn’t getting better. My fingers were still necrotic. It was the scariest thing of my life. The necrosis had made those parts of my fingers black and they felt completely dead. I just had no feeling in the tips whatsoever.

During this time, I had met with a hand surgeon at Mount Sinai. They did x-rays and it appeared that the necrosis had not spread to the bone. However, he did tell me that in his professional opinion, I would ultimately need to have some fingertips amputated. The dreaded “A” word. He couldn’t figure out either why my fingers had become necrotic so quickly, turning from perfectly normal to completely necrotic in the matter of 2 weeks.

 

Additionally, he found that although my radial arteries were perfect, my ulner arteries (on my wrists) had stopped before reaching my hands. This was the case on both hands, which lead us to the possibility that I may have been born with this. The other possibility was that whatever possible ‘virus’ they thought I may have had in November/December had caused the effects of my Raynaud’s to accelerate and have a spasm that affected my ulner arteries. We just found it bizarre that both hands were symmetrical.

So I met with another hand surgeon at NYU Langone, who was referred to me by the doctor at Mount Sinai. Although this doctor couldn’t figure out either what may have caused my situation, he agreed that surgery was imminent and needed to be done as soon as possible. I wanted to have both hands done at once, but he explained to me that I would have no use of my hands whatsoever. That honestly never even crossed my mind. I decided to do my left hand first, because it was in worse shape than my right.

We discussed the ultimate reality that at least two of my fingertips would need to be amputated, but we decided to go with an auto-amputation. This means that we would let the fingers heal as much as possible on their own before removing any of them. The benefit of this method is that it allows the finger to heal more on its own, and I would have the chance of losing less of a portion of my fingers. Otherwise, if we were to amputate sooner, a larger portion of each finger would need to be removed.

March 18^th, 2015:

We went to NYU for my next surgery.

The surgery that was to be performed was a digital sympathectomy, along with a vein graft. Essentially what he did was cut across the palm of my hand and cut the nerves in order to open blood vessels. Additionally, he needed to take a piece of my vein from another spot on my arm and replace the missing ulner artery. While they were performing the surgery, they found that there was a blood clot in my hand. Again, the cause was unknown, and could have been from a possible spasm. Still nothing was for sure except that the clot could have become worse if they hadn’t gone in when they did. A surgery that we expected to last about 3-4 hours ended up taking about 7 hours, but it was deemed successful.

I stayed at the hospital for 3 more days after the surgery and was finally released (for a surgery that was scheduled as outpatient). They kept me because the situation and surgery were more severe than they had anticipated once they went in. my case is obviously not a traditional or routine one.

After surgery, I was unable to do pretty much everything. I couldn’t drive on my own (my parents, sister, and sister-in-law all took turns taking me for oxygen therapy…that will be explained in a moment). I couldn’t even shower alone. It was humiliating for me to have to ask my husband to shower me. He wanted to do whatever he could to help, it didn’t bother him but it bothered me that, even though it was temporary, I felt like I had become an invalid. I’d stand there with surgical gloves on (because it hurt so much just for the water to touch my fingers), crying in pain and humiliation the entire time. Even before the surgery, showering was extremely difficult because my fingers were in such unbearable pain. I couldn’t even touch a soft towel without it feeling like it was comprised of needles. My fingers were just that sensitive and painful.

Just before I had gone in to NYU, I received a letter from NJ State Disability, stating that I would be covered through March 18^th. Once my doctor contacted them and explained that I was having major surgery on the 18^th, they were nice enough to extend it to March 21^st, the day I was released from the hospital. With everything else going on with my health, they apparently haven’t realized that they are prolonging my recovery by holding payments. I’m physically unable to work, and my doctors had filled out every requirement and then some, just to confirm this information to disability. So after a few more weeks I was told that they would extend it to May 16^th. Again, my doctor sent letters to them explaining the severity of my situation, but no response. As a matter of fact, as of now (the end of August), I still haven’t received a dime from them since May 16^th. What bothers me is that people can fake injuries and receive long-term disability, but then someone like myself, who truly needs it, must wait several months with no word. I was told that I just needed to continue to wait because that is the process.

So back to treatment…

March 23^rd, 2015:

My rheumatologist and I had discussed the possibility of adding a hyperbaric oxygen chamber as my next treatment. So I had met with the wound care center at Hackensack Hospital prior to my surgery and we decided that my best bet was to start just after the surgery.

The hyperbaric chamber is known for healing wounds, and we were hoping it would help the ulcerations (necrosis) on my fingertips heal. We breathe in only 21% oxygen when we breathe on a normal basis. While in the hyperbaric chamber, we breathe in 100% oxygen.

They lock me in what looks like a clear MRI tube, and seal the door. It’s basically a simulation of what Navy divers use to decompress. For the first 15 minutes, they bring you down the equivalent of about 2 lengths below the sea level (for me I went 33 feet down). Your ears pop for the first 15 minutes during the ‘dive’. For the next 40 minutes you lay there at that depth. Then you get an air break and you put on a mask that helps you breathe in regular air for 10 minutes. The next 40 minutes are the same as the previous set of 40 minutes, where you remain at the same depth. Then for the last 15 minutes, they bring you ‘back up’. I had gone in for a total of 2 hours per day, 5 days a week, for almost 5 months.

During this time I was still visiting with my doctors and trying to get surgery scheduled for my right hand. I wanted to get it over with so I could get back to normal as soon as possible.

April 2^nd, 2015:

I wasn’t feeling right and took my temperature at night, and again the following morning. I was in an incredible amount of pain again and now had a temperature of 102.6. My entire body felt achy. All of my muscles were extremely fatigued. Once again, I looked like a 90 year old woman just walking down the few stairs in my house (split level so about 7 steps per floor). So I called my rheumatologist and he sent me to Valley Hospital yet again. More IV drugs, another 3 days in the hospital, and a diagnosis of pericarditis (fluid around my heart) again, along with Pleural Effusion (fluid around my lungs). I was in so much pain it was just unbearable. We believe the reason this happened was because I was weaned off the Prednisone too quickly in order to have my surgery in March. Luckily we were able to get it under control and cleared up and I was feeling better in a few days.

Because of this, I was told that I needed to go back on the high dose of Prednisone, and because of the Prednisone the surgery for my right hand was delayed. It was originally supposed to be 3 weeks after the surgery on my left hand and I finally ended up being operated on 3 months later instead. I needed to be slowly tapered off the steroid this time to avoid any further complications.

June 17^th, 2015:

Finally the day had come to operate on my right hand. I had also come to the most difficult decision of my life…that it was time to amputate the index finger on my left hand (the surgeon had told me it would be removed when I was ready, and I felt that the auto amputation did as much as it was going to do on the index finger at this point). The top 1/3 of my finger was basically hanging on by a thread. I cant even begin to describe the amount of pain I was in. The surgeon was happy with my decision once he saw the condition that the index finger was in. And apparently I made the right decision because an infection had developed in the bone on my index finger, which would have been worse had we waited longer to amputate it.

It took another 6+ hours of surgery for the digital sympathectomy on my right hand. Wouldn’t you know it? They found a blood clot in the palm of my right hand that was even worse than the one they fixed on my left hand. It probably grew because of the length of time that we had to wait to do this surgery. Regardless, I was lucky that they were able to get rid of it before it got rid of me.

 

Today:

 

So as of today, I have some good days and some bad. There are some days I don’t even want to get out of bed, and other days I just push myself to do anything to give myself a purpose. Being unable to do many physical things that I’ve always been able to do. It’s a horrible feeling being told by doctors that I’m not allowed to work, that they will reevaluate me in October. I’m trying to feel useful but I’m limited to what I can do.

As of now, I have one more surgery scheduled on September 16^th, for the amputation of the top portion of my left pinky. The rest should ultimately be OK, although it will take a long time until they do heal.  After healing from my next surgery, I will be sent for occupational therapy to restore my motor skills in the amputated fingers. Even today I have difficulty bending my index finger.

My bills are continuing to come in stacks. It makes me sick every time I open the mailbox.  We have insurance, but there is still a co-pay for every visit to every doctor and hospital. I never imagined how they could add up. The chamber, for example, sends one bill for a co-pay for every single session. I went almost 100 times. And that’s just one doctor. But disability is still taking their time. I even sent them pictures of my fingers, but they still haven’t remitted anything to me in over 3 ½ months. I just don’t get it.

All of my doctors have recommended that I move to a warmer climate because the cold weather is not good for me. We’ll see how this winter goes and if its anything like this past winter was, we’ll start considering the options. But this is my home so I'm ready to go there just yet.

With one of her friends. Still smiling...

ATNY: NOW IN GLEN ROCK

I can finally announce- ATNY is coming to 175 Rock Road, Glen Rock. Sign up fast- you don't want to be shut out of this great acting class opportunity! No more driving into NYC every weekend for classes!

Mention me or my blog when you sign up- thanks! You can click right through the link on the bottom to get to ATNY registration pages.

Upcoming Classes

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NEW JERSEY CLASSES Act & Audition Classes Morris & Bergen County

TV/FILM ON-CAMERA: FINAL AGENT SHOWCASE IN NYC! ALL AGES, SUNDAYS IN NJ!

Sep 27, 12:30 PM
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ATNY NEW JERSEY TV/FILM ON-CAMERA ACT & AUDITION TECHNIQUE
FINAL NYC AGENT SHOWCASE IN 9TH WEEK IN NEW YORK CITY
9 or 6 Week Registration Option in Each Location!

Sundays, September 27th - November 22nd, Kids & Teens, 7 - 17
9-Week Students will remain for final showcase.
6-Week Students do not include 9th week Industry showcase.

2-GREAT LOCATIONS: MORRIS COUNTY & BERGEN COUNTY (GLEN ROCK!)

1) ATNY NEW JERSEY (MORRIS COUNTY)
120 Stone House Road, Millington, New Jersey 07946
Sundays, 12:30pm - 2:00pm

2) ATNY NEW JERSEY (GLEN ROCK, BERGEN COUNTY)
175 Rock Road (In the back at end of Parking Lot)
Sundays, 3pm - 4pm, (Ages 4 - 6, Non-Readers)
Sundays, 4pm - 5:30pm (Ages 7 - 17)

*Class division is determined by attendance. If numbers warrant dividing class, we do it by age and/or skill level. So, tell your friends!

If you can't make it into NYC for our popular diversified Young Actor Programs, then stay close to home and enjoy our strongest On-Camera Classes in your own backyard! In this great New Jersey Program, all young actors will enjoy both the constructive fun of improvisational study, combined with monologue and scene study. All Genres of acting will be included, from stage to On-Camera Training. With On-Camera Acting & Audition Technique, we'll prepare you for our final 9th week agent showcase with NYC's top agents and managers. Make Up Classes by request in NJ or NYC.

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REGISTER FOR EITHER COUNTY HERE:
9-Week Registration: $625 (Includes Final Agent Showcase in NYC)
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99 Problems and a Drone is One.

This is sort of a follow-up to my recent entry called No Comparison. I'm so fired up that it's a wonder I actually don't have high blood pressure.

This morning, someone running for office in my town posted an article about how there have been complaints about drones and I guess what the town council is going to (or probably not) do anything about them. The first comment is from the pot stirrer of all pot stirrers in town, who seems to find great satisfaction in complaining. He basically says to worry about drones is stupid and we have bigger problems in town. And then my head exploded. Ok, it didn't. But it felt like it was going to. Regardless of my feelings on drones, it's the point he made- we have bigger problems like drugs...

Yeah, well, Glen Rock will have to get in line with it's drug problem. Everytown, USA has a drug problem now. We're not even in the "Top 30" in New Jersey that just came out in the news. Trust me, our town council isn't solving the drug problem. But to be fair, no town council is solving the drug problem. Glen Rock can't even get the mafia-esque PSEG to stop just hacking down trees willy-nilly. That's been going on for years- they did it in front of my house in 2009 and my husband hasn't gotten over it still. So we have big and small problems and medium ones in between. Every town has problems. That's not a surprise- that's just called life. 99 problems and....you know the rest.

Regardless of all that, when are people going to get through their thick heads that issues are not a competition?? I say all the time that everyone's problems are bigger because they're their own. Most of my friends can attest to me saying this frequently. If you try to put a Snoopy Sno-cone machine together and it brings you to tears, you cry. You maybe even stomp your feet. And you allow yourself some time to wallow in self pity for not being able to get that fucking machine to make sno. You don't have to feel bad or shameful about your tantrum, thinking, there are children in third world countries who don't have Snoopy Sno-cone machines, sno or cones. Because in that moment, it's your kids saying you're the worst and you having to deal with it. It sucks and you have every right to think it's a big problem, at that moment, in your world.

I also said in that other entry that there are reasons we all care more or less about different things. So that the help can be spread around. We all find different news to be more or less upsetting and different stories motivate us to give or motivate us to judge. Whatever. The same week the news about our dick-pic sending cop was at it's height, I found out three people I know are sick. Two with leukemia, one with something unidentified. Guess what? The dick-pic thing wasn't *my* priority to be up in arms about. I care, but I have other things that are more important to ME right now. THAT DOESN'T MAKE THE OTHER THING(S) NOT IMPORTANT. Why is this not common sense? Where has common sense gone- flying around with the drones?? I'm fucking BAFFLED.

Back to the drones...I guess someone in town or more than one someone reported drone activity and they're concerned. They're ALLOWED TO BE CONCERNED. Just an aside, when I was arguing about it on the GR page, I was thinking of my mother. I was thinking about how Rita would like to lay in a raft, naked, in our pool. We didn't live in any "estate". We lived in a split level in New Milford. So great pains were taken to have high bushes on either side and a fence at the back and openings to the yard. Granted, my mother couldn't give two shits about people seeing her naked. But already I grew up hearing from the boys in my class- "Mrs. D doesn't wear a bra". That was fun. So then I'm imagining being a teenager, already goofed on for my mother's lack of undergarments. Now, there's a drone, taking photos of my naked oblivious mother, posting them on Instagram. I would've never lived that down.

One of the people for drones in the argument said they're loud and you'd know the drone was there. Ok, so let's say Rita noticed this thing flying overhead, which would really be reaching, is she jumping out of the pool naked and trying to chase it down? I don't think so. Highly unrealistic. No kid is taking the time to set up a long range lense camera to take pics of my naked mother. BUT, I can totally see some boys, playing with their toy, as it's been called, thinking it would be funny to see if they could get photos of girls in their bikinis in their yards and ending up with my mother. Rita was a MILF back in the day too- so they totally still would've thought they scored. When it's as easy as remote control airplane, there is no real reason not to try it.

So now, back to the dick-pics. At the height of the scandal, while it wasn't my main concern, I'm sure for any parents of teen girls in town, it was their main news story. AS IT SHOULD BE. Someone and everyone has to care about something. Using the ideology that "we have bigger problems" is just ignorant. There are ALWAYS going to be bigger problems to someone! And while yours are big to you, you are not the special snowflake that makes your problems, agenda, and/or priorities, bigger than everyone else's problems. If we, as humans, only had the ability to care about one thing, the newspaper would be one page! We wouldn't need news teams. Why would we- we're only supposed to care about drugs. I mean Isis. I mean cancer. I mean dick-pics. Houses where alcohol is served to minors where the parents are aware. Lights on a field, turf on a field, unwarranted police firings and suspensions, food served in school, the cost of a margarita pizza slice, parents driving like assholes at pick up and drop off at the schools....Crappily made Snoopy Sno-cone machines. SEE WHAT I MEAN??

Just because some citizens are concerned about drones, their invasion of privacy, and interference in air safety doesn't mean they can't care about drugs, the do-nothing town council and whatever the hell the "culture" is at the police department. AND EVERYTHING ELSE GOING ON IN THE WORLD. Rape, murder, drunk driving, disease, bullying, corruption. If you don't think something belongs in the news- don't read it. If you have issues with the town or the police not prioritizing YOUR particular concerns, take it up with them. Instead of taking these posts about legitimate concerns and making them about you and your agenda...

Imagine that we can care about it all. Just keep repeating that to yourself every time you feel the need to say "What about ____________??"

ATNY: NEW JERSEY

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If you can't make it into NYC for our popular diversified Young Actor Programs, then stay close to home and enjoy our strongest On-Camera Classes in your own backyard! In this great New Jersey Program, all young actors will enjoy both the constructive fun of improvisational study, combined with monologue and scene study. All Genres of acting will be included, from stage to On-Camera Training. With On-Camera Acting & Audition Technique, we'll prepare you for our final 9th week agent showcase with NYC's top agents and managers. You have your choice to register for 9-Week Intensives (Showcase Included) or 6-Week Abbreviated Sessions.

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No Comparison

Friends With Money- Fundraiser scene

Obviously I got a gut punch this week hearing about Dylan Canfield. Again, not that it's about me. But I'm making a point here- bear with me. I found out about his diagnosis on social media. On Facebook. I'm sure I would've seen Elissa at some point and she would've said something. Or someone would've passed the information on. Instead, boom, it was on Facebook and then it was everywhere. I saw North Jersey Media picked up the story after thousands of dollars had been raised. And thousands of dollars have been raised because our mutual friend Marissa posted a GoFundMe page that went viral that night. In less than seventy two hours approximately thirty thousand dollars has been raised. I'm in awe. Not because I don't think people want to help, but just at the sheer power of social media to do good. We all know it can do evil but it can also help those who need it most.

Then, gut punch again. Less than forty-eight ours later, I see a GoFundMe page for someone I grew up with around the block from me. Evangeline Kartanos was diagnosed with the same thing Dylan has. What are the odds? Or are the odds just better nowadays that someone will set up a GoFundMe and it's going to get around? I love social media for this. Before social media, you had to have the actual fundraising event and serve the rubber chicken to get people to open their wallets. Now, you can just straight up tell the story, and people can click their donation right in. No chicken needed. In any event, I'm saddened and shocked she has to go through this, but happy to share the page and that people are donating. Hopefully New Milford (and beyond) will rally around "Vange" (as she's known to friends), the way Glen Rock (and beyond) is rallying around Dylan.

I was talking to my friend Jen the other day- she was having a really bad, stressed out day. Then she read my post about Dylan and made a remark that was something about that she was upset about something silly when there are real things like leukemia to be upset about. And I said what I always say- that everyone's problems are relative. We all have problems, and they're all bigger because they're our own. Of course you need perspective and a good slap into reality sometimes, but your problems are still your problems.

You can also care about multiple things at the same time. I don't know where people get off judging what other people care about. What causes they want to champion. The prioritization of their caring and causes. I'm so tired and perturbed at people on social media thinking they have the right to be the judge and jury on what causes are important and what aren't.

Bruce Jenner comes out as transgendered Caitlyn. Caitlyn gets an award for bravery. Out come the memes about how that isn't brave and the troops should be getting the award for bravery. NO ONE IS DISPUTING THAT TROOPS ARE BRAVE. Are we only allowed to have one group we consider brave? I didn't know bravery has hard and fast bravery levels that have to be determined by the public before giving an award.

Cecil the lion gets murdered illegally, unnecessarily, cruelly and brutally. Jimmy Kimmel gets choked up and asks people to donate to wildlife conservation. People do. Out come the memes about how people care too much about a lion but don't care enough about murders of humans in the news around the same time. Guess what assholes? WE CAN CARE ABOUT CECIL TOO. We can care about slain humans AND slain animals at the same time. That's what we have brains for and imagine- we only use a small percentage of them! I'm certain there are some people that use decidedly less!

Let me explain it even more simply. I don't know where people get the idea that if you're outraged, saddened, struck, or passionate about one thing, doesn't mean you're not feeling one or all of those things about something else. At the EXACT. SAME. TIME. Or maybe you don't. But it's your right to feel however you feel about anything. Maybe you're more of an animal person than people person. Maybe you have a particular affinity towards African lions. Maybe your favorite movie has always been The Lion King. It doesn't matter. It struck people. I'm not much of an animal person but it struck ME. As did what happened in Ferguson, the two teen boys lost at sea, the people killed last weekend in riptides at the beaches I frequent. I was struck by Dylan and Evangeline. I'm struck by the elimination of the death penalty in Connecticut where those two disgusting excuses of human beings who killed William Petit's wife and daughters, lives are going to be spared. I care about Isis, Israel, and the troops.

There is always going to be something. Hopefully we all never stop caring. Hopefully all these stories motivate you to DO something instead of sitting around making or passing on memes of judgment about what others are caring about. Instead of sitting around perpetuating your slacktivism, how about doing something. Go to a rally, write your elected officials, join a cause, donate money, make meals or assemble goodie bags for people in need. But don't tell people what to care about. Difference is what makes the world go 'round and it's what naturally divides the money and resources amongst many causes. Sometimes, someone has to be personally touched to force them to take action and that's okay. Everyone has different motivations for why they care about certain causes more than others but just remember that it doesn't mean they don't care about one that's personal to you as well.

I know that I personally prefer to donate to the "end user"- right to the people I know are going to benefit from it the most. I like to read someone's story, be inspired to give, and then give directly. That's my "thing". If you want to sit around clicking and donating money is your mitzvah, here are some causes I think are worthy....

For Dylan & Elissa: http://knowitallinnj.blogspot.com/2015/08/for-elissa-dylan.html

Evangeline Kartanos: http://www.gofundme.com/Vange_Kartanos

WildCRU: http://www.wildcru.org/

A friend of mine posted this on one of my message boards today: Mike Grimes family support- http://www.gofundme.com/exnd37dg

I'm pretty sure we can care about them all and it doesn't take anything away from caring about anyone else.

Shore Points

I got the most incredible birthday gift from my cousin. I invited her up to us to have dinner and she had to decline because she was going to be on vacation. For three weeks. Instead, she offered me the use of her condo, which just happens to be practically ON the Jersey shore, in the area we happen to hang out in when it's just B, E, and me. Of course it took about a nanosecond for us to accept her and her husband's offer and just like that- we had a "shore house".

We can't really take typical vacations because of the store. Bryan has to be in our store on Saturdays. We haven't yet figured out a way not to have either one of us working on Saturday. But we're closed on Sundays. For three weekends in a row, he just left at four o'clock instead of five o'clock and we jetted down there. Normally we'd do our Cheesecake Factory thing here every Saturday night. Thanks to our borrowed digs, we were able to explore new dinner territory. And we did!

We tried out Bahr's Landing for my birthday. That's in Atlantic Highlands. It was good. I didn't love it or hate it. I actually liked their gift store more than I liked the food. It's a cool place though, right on the water in a marina. They have a dock & dine option if you're hungry on the boat. I had steamed lobster which was better than the last place I'd had it at. I didn't love the bread. They had biscuits which I'm not really fond of anywhere. Unless it's Pillsbury.

http://bahrslanding.com/

We also went to Rooney's for the first time in awhile, in Long Branch. Bryan LOVED his meal. I have to say, the shrimp cocktail was the best I've had. I also had the Chilean sea bass which was also very good. Only issue there was that it was definitely on the pricier side.

http://www.rooneysocean.com/

The real finds? One is Charley's Ocean Grill in Long Branch on Avenel Rd. It actually doesn't have the best reviews on Yelp- another reason why Yelp sucks and is unreliable. I didn't make a reservation because I couldn't do it online through Open Table. It was already after eleven o'clock on Friday so I figured we'd just take our chances.

http://www.charleysoceangrill.com/

We got there around 6p and they said it was a forty-five minute wait. We walked over to the skate park around the block. They took my phone number to call me when the table was five minutes from being ready. They called at 6:24p so I was thrilled.

We got seated outside which was nice. Their specials menu sounded great. I ordered mozzarella and tomato with balsamic and B got Brussels sprouts with Parmesan, bacon, and balsamic. Both were phenomenal. I haven't seen tomatoes that large in a long time. It was also a huge portion. We both took some of our appetizer home. I got a salmon encrusted with sesame seeds with mango sauce on top of rice. It was fantastic. Bryan got tuna steak with pineapple sauce and he was also very happy with his selection. It all came out really fast too. Of course, they also had the kind of bread I like as well, so it could've been a win on that alone.

After dinner there we walked across the way to Hoffman's Ice Cream in Long Branch. This was probably the most interesting part of our time. We'd never been there. The ice cream was awesome. I had black raspberry one night and s'mores another night. Very pleased. It was crazy in there though. You have to take a number like at a deli counter. They're THAT busy. But the interesting part was the girl behind us sitting down. All of a sudden she was served with a plate- eight scoops, eight toppings. All of a sudden she went to TOWN. We didn't know what was going on. An employee started yelling out how long she had. Apparently they have an "Octopus Contest"- eat all that in eight minutes and get a t-shirt. Well, she didn't make it in time. So she ate all that for nothing. I'd have just bought a t-shirt and called it a day, but that's me. We usually go to Crazies in Rumson, but this puts us on a much better path home.

http://hoffmansicecream.net/

I haven't been writing much because we've spent every free moment down the shore and/or at the town pool. We don't mind the drive there and back on Sunday. However, we were loving the use of my cousin's place. I can't thank her and her husband enough. I bought her quite a few goodies that I left for them to find when they come home. (Psst...Steve, I *PROMISE* I didn't throw anything away....) If only we'd win the lottery- we'd be neighbors!

Someday.....

Threading for a cause

I was contacted by Zalak Patel today. She does threading, waxing, facials, and Henna tattoo in Fair Lawn. She said Elissa Canfield is one of her best customers and she was shocked and saddened by the news about Dylan. She wants to help raise money. She is doing a promotion where she will give 15% of her sales to Elissa from any services she does until the end of August. She will see how that goes and if possible she will continue into September. She will update me on when the promotion will end. Just mention Elissa & Dylan when you go to see her for services.

So if you need something like this done, why not go where some of the money is going to a great cause!

**I spoke to Elissa and she confirmed she does go to Zalak for services**

https://www.facebook.com/Threadingbyzalak
She works out of Vlad's Hair Studio: 14-12 Plaza Rd North, Fair Lawn (Radburn area)
Call/Text 917-995-1796

CASH ONLY.

For Elissa & Dylan

I hate having to write these posts. I especially hate having to write this because it's a child. I feel like I shouldn't know any kids with cancer- it should be that rare. Unfortunately, now I've personally known two. Hopefully I've met my quota. I used to think everyone had a limit on bad things happening. If life was too good, it had to balance out with something bad. But then if life threw you really bad things, it had to be balanced out with good things. Unfortunately, sometimes, some people, get more than what one would consider their fair share of the awful.

When anyone is diagnosed with cancer, you feel helpless. What can you really DO, beyond the usual of meals, gifts, and your time? You can't make someone get better. I don't cook and I don't have a lot of free time. What I can do is write, and I have a huge network.

I met Elissa and Dylan three years ago at a Newcomers & Neighbors kick off party in town. We started chatting and it turned out Dylan and Ethan share the same birthday. The boys became fast friends. I came over for a play date one day and Elissa shared her story with me.

Everyone has a story but her story is just a testament to her strength. Elissa moved to New Jersey from California to start a great new life with her husband. She got pregnant and had Dylan. Then a few short months later, her husband, in his early 40's, was diagnosed with cancer. He passed away not long after that in August 2009. Dylan was seven months old. I remember thinking that I don't know how she did it. She wasn't near home or her family, in a new town, with a young child. She was young herself- I believe she was only twenty-eight when her husband died. Too young to know that type of tragedy. There aren't really even support groups for such young widows whose husbands die of surprise illness. Yet, every time I saw her, she was friendly and smiling, just doing her thing. Working, traveling for fun, for work, alone and with Dylan. Just chugging along, living life, a little team of two. Dylan and Ethan were in similar activities, so I'd see Dylan at swim class, at the park, and at the pool. I'd catch up with Elissa and everything was always "good". She's just not someone who wallows or complains.

The diagnosis came this week. I immediately realized I hadn't seen her in a few weeks. I thought she was just busy with summer stuff like we had been. I asked Elissa how this diagnosis came about - just because it seemed so unfathomable. This is what she said:

Basically Dylan started walking funny and really slow about a month ago. At first it was just annoying, but when he stopped running and swimming I got worried. So, I took him to the pediatrician. They ordered X-rays and blood work. The blood work came back suspicious of leukemia. We were told to go straight to the pediatric ER for further testing. There, they confirmed the diagnosis of Pre B cell acute lymphocytic leukemia. Which is supposed to be the "best" type to have.

Of course, when you have a child the same age, same gender, it's an immediate punch in the gut. First of all- how many times have we all pushed off odd behavior or complaints from our kids? I know we do! Two summers ago, Ethan was complaining his mouth hurt. He was a terrible eater so we assumed he was just trying to get out of eating. Turned out he had coxsackie. We felt terrible after that diagnosis. But we still don't jump at every headache or stomachache. Kids act weird and they love to complain. So you pick & choose what you really take seriously. It seems crazy, unfair, and I don't know what, that it could be leukemia.

It's not about any of us with our kids, but it's that Dylan is now everyone's kid. It could be any one of our kids with this diagnosis. You just want to do anything and everything you can. You need to believe this is beatable. You feel like if there is a big enough army sending positive thoughts and energy, giving enough money, making enough meals, etc, it's all going to be okay. Well, Elissa & Dylan, your Glen Rock army is huge and we have arms branching off us that go to infinity and beyond. Everyone is rooting for you and there are plenty of people who want to be there for you every step of the way through your fight.

Please donate and/or share their GoFundMe page to help with whatever costs come up to help Dylan. It's hard enough to be a single, working mother without this burden too. Any contribution will be hugely appreciated. I will update with any further information on Dylan's condition and anything that can be done for them.

http://www.gofundme.com/2wpknmns

Best of Bergen 2016

It's voting time! Best of Bergen in 201 Magazine for 2016. We need you to vote for us in #76 Best Home Décor Store. Just type in Shades of Soho, Glen Rock. There is no lighting category. But we need YOU to help us make win #7!!

But also vote for the rest of your hometown favorites!

Thanks in advance for your votes! We appreciate each and every one.

www.surveygizmo.com/s3/2249239/201-Magazine-s-Best-of-Bergen-Readers-Poll-2016

Graze

Do you know what Graze is? If not, you should. I can't even believe how much I love it.

It seemed kind of like another gimmick where you get stuck with a subscription service that you can't seem to get rid of. But instead, it's something you're waiting at the door for. No worries, it's not a pyramid scheme. I do get a credit toward my next box for referrals, but I'd be recommending them anyway. As anyone who reads my blog knows, I don't write about stuff I don't like. I don't even have advertising on here. I could, I've been approached and pushed to do so, but I won't. I'm just not ever going to be able to write something just because someone is paying. I just like to bring you all the best of the best that I find in my travels...

Anyhow, back to Graze. So, it's a subscription service for snacks. THE FIRST BOX (of four snacks) IS FREE. They're good little snacks that pack a lot of punch. They're on the healthier side, and lower caloric side. Most of them are low calorie. Some are around two hundred and forty- the "flapjacks", but they're so yummy, every now and again, I don't care.

You go on their site, and sign up. Then you "x" out anything you definitely don't want. I'm a sweets person, so I x'ed out a lot of the savory stuff. I left a few in for B in case I feel like sharing. The first box is free and comes with four snacks. It's up to them what comes in your box, but if you x out everything you really wouldn't like, you're going to get things you'd want to try.

My first box came with pretzel/chocolate dip, honey/chocolate flapjacks, a raspberry/coconut/chocolate thing, and something else. I really don't like yogurt, but I bought Greek yogurt to eat at work. Because in my box this week (2nd box) was "dark chocolate rocky road" yogurt topper so I thought I would try the topper with it. It's one hundred and thirty calories and it's dark chocolate granola, chocolate fudge & freeze dried cherries. Guess what- I only used half of it, so it was more sixty-five calories, added to my eighty calorie yogurt. Made the yogurt not just palatable, but GOOD. And I didn't feel like I needed the whole snack in there.

Last night, instead of candy, I ate the "stars & stripes" snack. It's mini black currant stars, raspberry fruit strings, and blueberry flavored cranberries. Also one hundred and thirty calories. Normally I'd eat triple that in jelly beans.

If you use my code, you get your first and fifth box free. You can get four or eight snacks, once a week or bi-weekly, or they have larger snack boxes available. They're great to throw in a kid's lunchbox for sure. Not too big, not too small. Just. Right. YUM.

A four snack box is $6.99
An eight snack box is $11.99
You can cancel after the free box. No obligations!

www.graze.com CODE: TARAD2KNP or TARAD2KNB