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Category Archives: Personal Stories

Having A Child Born With A Rare Disease And Almost Losing Custody

I don’t like to share private matters on-line, yes I know it seems to be the “norm” now days but I personally try to steer clear of sharing intimate details or heartbreaking ones with strangers. Recently a friend suggested that maybe, just maybe it would help someone else out there to do so, even if just to let them know that they are definitely not alone.

I suffered four miscarriages, two of them were before I actually gave birth to my first child, a daughter Ellen. To sum up as best I can I bled for 10 months after giving birth to her, you heard that right 10 months! The doctor that delivered her kept telling me not to worry about it , it took months to get another doctor to look at me because I was another docs patient! As it turned out an old family physician that had taken care of me growing up called me back immediately after I called for his advice and told me to go to a nearby hospital immediately where there would be a Dr.Mavis waiting for me. The doctor was appalled that I (sorry to be graphic here) had been suffering with retained placenta for all those months and admitted me for an immediate D&C, I had no one there to watch Ellen until my mother could get to the hospital so while they had me out and were doing the procedure, the nurses took care of my daughter. It was over, I went home and was grateful that I had finally found someone to take care of the issue, boy was I in for a shock.

After Ellen was born I noticed two small translucent brown spots on her shoulder, the doctor said they were birthmarks but each week there appeared more of them, every appointment I had the Dr. said the same thing that they were merely birthmarks. Even though I was young it made no sense to me, I told him that I though that birthmarks meant born with he would rush me out telling me that I was a typical first time mother that fretted about nothing. By ten months of age my daughter was covered with the same looking spots sparing only her face, hands and feet!

A matter of days after I got back from the hospital having the D&C behind me a man came to my door demanding to see my daughter, he explained that he was from Children and Youth Services and that they had received a complaint from the medical staff at a nearby hospital! I was mortified when he told me that they had reported that my child was covered from head to toe with BRUISES! You can’t imagine the disgust I felt having a male stranger examine my child’s body, I began shaking and crying as I explained to him what my doctor had said and that even though I didn’t have a medical degree that if they were bruises they would not all be identical in color! Luckily he agreed but said he’d never seen anything like it and that I would have one month to have her diagnosed for the issue or I would have her taken from me! That was the beginning of a turmoil that would last for many years to come.

We ended up taking Ellen to doctor after doctor all around our state without one of them being able to diagnose her, the C&S worker allowed us more time due to the fact that we had an upcoming appointment in New York State with a doctor there. After that particular appointment consisting of all kinds of tests which included a skin biopsy we were told that she suffered from a mast cell disease that there wasn’t much known about. I was heartsick but relieved that at least it would take care of Children and Youth threatening to take our child from us!

It would take relocating to Florida to get some real answers as well as years on end of my doing my own research. Ellen had Urticaria Pigmentosa, a cutaneous form of Mastocytosis a rare mast cell disease. To this day the doctors all about our area haven’t the slightest clue as to what mastocytosis is and the majority have never heard of it. In the early days after her being diagnosed they tried a medication (an orphan drug at that time) called Gastrocrom which went for nearly $200.00 for each months supply, we were not rich and our insurance would not cover it, to say that we struggled would be a gross understatement. When Ellen was 10 years old and began having trouble walking and suffering bouts of unbearable pain we learned that she had osteofibrous dysplasia in the bone of her tibia, a rare benign condition with no known cause which causes fibrous tissue to develop in place of normal bone causing the bone to deform or fracture. We took her to Dupont Institute in Delaware to have surgery on her leg, as if she hadn’t been through enough.

Ellen’s disease will be one that will last all through her lifetime, she has good and not so good days but I am happy to say that she is healthy in spite of her disease. There are people out there that intentionally harm their children, don’t even want their children and abuse the hell out of their own children, to think that we could have lost our child due to a rare disease that physicians all over the place knew nothing about and rather than try to investigate, threw their hands up in the air is a terrifying thought. What I have learned from all of this is that if you know (a mother always does) that something is wrong with your child and can’t get a doctor to listen or care, do it yourself. Thank God we have the inter-net now days because back then there was no inter-net, there were only medical libraries none of which were in our area but that didn’t stop me. Do it yourself if no one can or will help you, like our own bodies we know better than anyone does when something is wrong with our children!

I truly hope that none of you ever have to experience anything similar to this situation but if you do, feel free to contact me and whatever you do don’t give up, especially if you are dealing with a rare disease. You may feel like no one in the world can understand, like not a soul out there cares but that’s not true, really it isn’t. To think that someone can just waltz into your home and because they are not familiar with something take your own child away from you is unimaginable but it has, could and does happen. Don’t be a victim of a system that can be beneficial but also very flawed.

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Posted by on May 8, 2019 in Personal Stories

 

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Renting From A Slumlord?

Sadly for me I have had to rent many times over the years, most times the landlords we’ve dealt with have been fairly decent people but like too many others out there, we have have had more than our share of slum lord landlords, you know the type, the ones that care only about gouging that rent every month and to hell with any repairs or issues with the place. I would have to say that the current landlord we’re dealing with, Ron, is by far the worst one we have ever had the displeasure of knowing.

In June of 2018 we began renting a nice enough looking house in a rural setting that clearly needed a lot of work, Ron made an agreement with us that the repairs we had done and improvements we made to get the house to a livable state would be deducted from the $800.00 a month rent, he added that we’d probably be here close to a year without paying monthly rent because of all of the work the place needed. The only stipulation was that we didn’t move in for a year or two and move out, that we’d be renting long term, that was fine by us because we had no intention of moving again anytime soon.

To sum up this long ordeal as best I can, two months after we moved in he demanded rent, he said that he needed money to pay his mortgage payments, we offered to pay $500.00 a month and for him to put the other $300 toward what he owes us (it was over three thousand dollars), no that wasn’t good enough he wanted the entire $800! Like fools we began paying it and took him at his word that we’d settle on what he owed us a little later. What a mistake we made in trusting his “verbal agreements” because he is more of a shyster than we could have imagined.

We had to have the house carpeted since there was only plywood on the floors that you could see through the cracks of down into the basement. The kitchen sink didn’t work it had been clogged solid in the pipes running from it, the roof leaks and the ceiling came falling down on our heads, we had 150 gallons of fuel oil delivered for the heat and hot water and he “forgot” to tell us that the oil tank leaked so we lost a lot of it from running all over the basement floor, he allowed the upstairs bathroom pipes to freeze and break when he lived in the house and didn’t want us to hire anyone to have it fixed but promised to have it repaired and working in October of 2018, it still isn’t working, we had the upstairs sink fixed so at least that worked, he had taken ALL of the heat baseboard covers out, all of the window trims and all of the door trims.

As if all of these things weren’t bad enough, he informed us AFTER we were all moved in that the garage that sits about 10 feet from the house was being rented out to some guy. He assured us that the guy only came “once, twice TOPS a week” that he was quiet and kept to himself. The guy has been coming EVERY SINGLE DAY for hours on end BLARING MUSIC to the point that we couldn’t even hear our televisions in the house! Worse still was that I kept having medication disappear and other stuff being “misplaced”, I thought I was going bonkers until a few months after we moved in and I found out that the same key that opened the garage, also opened the house! When I approached Ron about it he said that he knows the guy that rents the garage, that he was like family to him and that I didn’t need to worry! He also informed us that the garages electric was on our bill!

Lo and behold, Ron recently told us that he’s getting married and wants to move back into the house! After all of the lectures about wanting us here long term and us agreeing that we didn’t want to move anytime soon, he pulls this to ass insult to injury! So what can a tenant do when there is no written lease, all we can do is to spend the money to hire an attorney and try to collect all of the money that he is hell bent on screwing us out of. But it’s pretty bad when we have to spend yet more money that we’ll need  to move, just to enforce and agreement made by a dishonest slumlord!

Any of you that have gone through a similar nightmare, I pity you, please feel free to share your suggestions or horror stories. I know that some laws are different from state to state, but surely there are some laws to protect tenants as well as the landlords! This one needs to be made an example of, the rent has always been paid by the first of the month and because several times it’s been paid a few days early, the landlord has been sending texts every damned month the week before the rent is due stating that he doesn’t see it in his account yet! Be careful who you trust, get everything in writing because the good old fashioned verbal agreements on a handshake mean nothing to dishonest slumlords!

 
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Posted by on May 3, 2019 in Personal Stories

 

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Being Grateful

Have you ever stopped to take a few minutes of your busy day to ask yourself what it is you’re grateful for? I know it may sound strange but I think in our day to day lives we often overlook what we do have and focus on what we don’t have. Something as simple as the power going out makes us realize just how spoiled we’ve become, how dependent and I hate to say it but ungrateful. Did you ever notice that you can help a close friend or relative every single day in one way or another for a year or more, hell all of their adult lives and the one time that you are unable to help will be the one time they remember? Rather than be grateful that they have you in their life to help at all, grateful that you’ve been a trusted friend, they focus on the negative.

Personally I am most grateful for my health, I am ashamed to say that it took a very serious situation to make me realize that though, I’m only human. I am grateful for those that do love me, for friends and family, for a roof over my head, for my faith and for my four legged fur babies. As silly as it may sound, I am also grateful for the little things that so many take for granted, to feel the sun on my face, to hear and watch the birds at the feeders, the deer graze in the yard, I’m even grateful for the black bear that continually trashes my bird feeders!

With so much daily stress in everyones lives it’s often hard to find reasons to be grateful, your vehicle breaks down and you can’t go anywhere, yes that’s bad I’ve been there, I AM there but it could be worse, I could be miles from home and break down with no way to get a tow or a ride home. Perhaps you lose your job, maybe it’s a way for you to spend more time with your loved ones until a better job comes along. You take a fall and are temporarily on crutches, there are people out there in wheelchairs with no legs at all and no way to ever walk again.Your spouse wants a divorce, ugh that is a heartbreaking thing to go through for anyone, devastating but maybe, just maybe there is someone out there that is a thousand times better for you, loyal, honest and considerate.

If I have learned anything over the past few years it’s that there is always someone out there worse off than we are. I have always been a firm believer that everything happens for a reason, no matter how horrible things may seem, it all happens for a reason, we may never discover what the reason was but believe me there is a reason. Many times if we look deep enough though, we do see the reason for why things happen, later on. As hard as it is if we just focus on the things that we are grateful for, no matter how small or irrelevant they may seem, we are humbled, more grateful for the good that comes our way and a hell of a lot happier. Try listing the things that you’re grateful for whether in your head or on paper, you’ll see what I mean and you’ll find yourself a better person for it.

 
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Posted by on April 8, 2019 in Personal Stories

 

Familiar With Any Novo Amor Music? Taltz Commercial Feature Song

I love music in general, all kinds of music except super hard screechy rock, jazz or opera, I can listen to music from sunup to sundown and if I had to choose only one between television/movies or music, it would be music hands down. Those close to me laugh because I always seem to find songs I love from the more unfamiliar groups, yet when they hear them they love the songs too! Months ago when a commercial was on tv for Taltz psoriasis medication, I didn’t watch the ad itself but heard the song playing in the background, all I could make out was and I feel your ship is coming in……. I loved the soothing music and went to search for the song, group, etc. Weirdly though it’s always the same with me, I’ll love a song from a group but then after I listen to more of the groups music it’ll turn out that I only like that one song.

I had never heard of Novo Amor prior to hearing the “Anchor” song but I adore that particular song, it’s so mellow, soft and stirring to the soul. The lyrics may be a bit unusual but it doesn’t even matter because the song is so beautiful, come to find out the video is equally appealing, in my opinion. It is a fisherman in his boat that finds a Selkie ( seal folk from Scottish mythology ) kind of like mermaids. What struck me most, besides the song, was how through the entire video not one word is spoken but you know exactly what is going on and more so what is felt, especially by the fisherman, that actor is unbelievable in it.

Back to the song, it is just one of those songs that is so relaxing both the music and lyrics, I didn’t care for any of the other songs I heard from Novo Amor but it doesn’t matter because the Anchor song more than makes up for it, besides it really only takes one hit for a group or musician to be put “on the map” and this one will most certainly make Novo Amor known to a great many people.

 
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Posted by on March 14, 2019 in Personal Stories

 

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Children and Discipline

It seems like every time that I’m out in a store shopping there is a child screaming and throwing itself on the floor because the child can’t get it’s way, I look at the parents and wonder why they allow the kid to behave like that. Most parents I see in these cases don’t even seem to notice the child is acting the way he or she is, as if they have become so used to the bad behavior that they are immune, but guess what, other people that are there shopping are not immune! Now before you go saying that I’m being mean listen up, I love kids but like the majority of other people I prefer well behaved children, the parents with the ill behaved kids are the first to gripe about other kids they see that are brattier than their own but don’t seem to be able to look at their own children’s behavior objectively.

My father used to tell me that if he so much as believed that we were thinking about acting up, we were going to get it, by get it I mean a slap across the face. Now days with everything being taken to an extreme, people object if you so much as spank your child and guess what, our youth are worse than they have ever been and that’s a fact! Prayer in schools has been prohibited now so there goes any hope of religion, kids are wearing inappropriate clothing parading their bodies around for all the world to see, having sex every chance they get and getting pregnant before twelve-th grade, which is then glamorized on television like it’s the “in thing”. I wonder how it can be said that society has come such a long way when it has actually regressed. Children see so much on tv and so many with no reason to before, now question their own gender because nothing’s sacred any more!

Yes, perhaps I was disciplined too harshly when I was growing up but you know what, it has made me a better person and that’s the truth. If I was ever sassy to one of my parents I would be backhanded across my face, if I considered skipping a class or school all together I would be KICKED in the ass, yes I literally mean kicked in the ass! And these were the mild consequences for the lesser offenses I was guilty of. I don’t agree with or condone child abuse but yes, I damned well condone child discipline. These kids that get away with God knows what today, these are the kids that will grow up to make up our future society, if they have no respect today do you really believe that they will have respect for people or property as adults?

Good healthy members of future society start at home, the media doesn’t help matters though because you can care enough to raise a child to be a good adult but the media may very well undo all of your efforts. There is so much violence being aired on television, rape, murder, stealing, child abuse, priests molesting children, arson, animal abuse, the list is endless and children have become as immune to it as the parents that are immune to their children’s bratty behavior! How can any of this possibly be healthy and not affect our youth! Hell, like most adults the youth of the world can’t even socialize the old fashioned way, they are all on computers full time. A lot of young people can’t fill out a paper check, can’t correspond via snail mail and can’t visit a friend by going to their house but rather do it by way of computer or cell phone, that is unless they want to have sex, God help us if they should figure out a way to do the deed itself by way of a computer or cell phone!

It seems inevitable that the problems our youth face will only grow worse, society dictates that. Too many young people grow up and have no lasting bonds with their parents, they stuff them into nursing homes where their own lives wont be affected by them, out of sight out of mind. I guess if you love your children you have to set an example for them and discipline them if need be, you can’t really want what’s best for them if you have no regard for who they will grow to be in the future. I’m shocked by the number of parents that don’t set any boundaries at all for their kids, assuming that a child can find it’s own way in every situation. We are the primary role models for our children and if we don’t care enough to set solid rules and boundaries, the child will grow up to be the same and have zero regard for anything but themselves in life.

 
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Posted by on October 4, 2018 in Personal Stories

 

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Tenants Beware

Are you one of the people that have no choice but to rent a property because for whatever reason, you can’t purchase a place? Are you one of the few that has a landlord that is an honest, upright human being that isn’t looking to make money off of you at your own expense? Landlords get away with far too much, now don’t get me wrong I have heard countless horror stories about tenants trashing properties just because it isn’t theirs and they don’t care, but by the same token there are a majority of landlords that just want that money every month and don’t want to do a damned thing to maintain the property.

A very dear friend of mine recently rented a house that seemed beautiful, the property was stunning and she believed it to be a peaceful area. After moving in she discovered that she couldn’t use the kitchen sink because the drains were all plugged. One of the two bathrooms was unusable because there were broken pipes, there was a pipe leaking in the basement, she ordered one hundred and fifty gallons of fuel oil only to discover that the fuel tank leaked and most of the oil poured out into the basement, and the ceiling in the living room leaked so bad she had to use buckets to catch the water and pieces of ceiling that fell down. The landlord was aware of all of these issues but never said a word about them and in lieu of a lease, things are tricky to say the least. The driveway trashed the tenants and her visitors vehicles  and the landlord, we’ll call him Ron, said that he was having someone come and take care of the driveway, he never did. Said he was going to have someone fix the bathroom “in several months”! The electric service to the house that the tenant pays also has the garage electric on it, the garage that the landlord is renting to someone else!

As if these things weren’t bad enough, the landlord informed the tenant that the guy that’s renting the garage is only there at the garage (which is about ten feet from the house) once or twice a week, the guy and about 10 of his buddies come and go to the place every, single day! They come in at two in the morning revving the motors of their trucks, four wheelers and motorcycles. The place is far from being quiet and peaceful and is more like Grand Central Station!

And now for the final kick in the groin, are you ready for this one, the house and garage are keyed with the same key! When my friend had a big problem with that, Ron told her that the guy renting the garage doesn’t have a key that he uses the coded, keyless lock on the door, only that wasn’t true as she watched several of the guys that went into the garage use the key! He had the nerve to tell her that HE trusts the guy that rents the garage that he was like family TO HIM! What a shame because the place could have been beautiful if it had been maintained properly, there are people that I will never understand that own a nice home but just don’t care enough about the place to keep up with it.

Be careful if you’re going to rent a place anywhere, with anyone because you never know who you’re dealing with and there are a lot of slum lords out there. Either that or have a damned good attorney in your pocket because chances are, you will need him down the road.

 
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Posted by on October 4, 2018 in Personal Stories

 

Obese and Underweight Women

There are all types of people out there, all sizes, shapes and colors so tell me why is it that when you go jewelry shopping the ring sizes all seem to start at 7? Go into any shoe store and try to find shoes and you’ll be hard pressed to find anything smaller than a 7, on that rare occasion you may find a 6 1/2 but that’s even uncommon. Ladies, try to find a D or DD cup bra in a 32, chances are you will not find one out there because women that have boobs, many have them because they are so heavy, which means that naturally they are bigger around, unless you can afford a boob job and order specialty bras!

Not all women are big and not quite all of them are heavy, I get aggravated when I hear obese women complaining that they can’t find clothes in their sizes, what about women that aren’t heavy. It infuriates me when women are so catty that they cackle at thin women, a lot of the women that are very thin don’t like to be that thin any more than those women that hate being obese! The skinny mini women would love to look in the mirror and see an ass behind them, any size ass would do, anything other than a flat board following them around!

In spite of these obese models telling young girls to embrace their rolls, it is absolutely not healthy to be fat, by the same token it isn’t healthy to be too underweight either. Society needs to stop encouraging girls to be happy with being obese because it’s their lives on the line, it may be years down the road or months but obesity can and will kill, period! Stores selling all of the huge sized clothing sends a not so subtle message that it’s okay to be overweight, everyone is. There aren’t enough small sizes of anything out there, small women are harder pressed than the heavier women to find clothing, unless they want to go into the children’s sections and they are even made bigger now days!

The next time that you’re in a store and you see a woman smaller than you are shopping, try to look at things from her perspective, she’s having just as difficult of a time finding clothes to fit her as you might be. Try not laughing or feeling jealous or whatever the reasoning is and have a little understanding.

 
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Posted by on October 2, 2018 in Personal Stories