Kidney Transplant is simply a treatment option

When it comes to talking about my daughter’s health, the words come easily. She is complicated at best and if you read my other posts you can learn a lot about her. She is now 12 years old and just about 7 months post Kidney Transplant. Everyone just assumes that since she got a kidney everything is better. She is no longer in need of dialysis treatments but she is certainly not out of danger. Her health has improved but she is far from healthy.

The first few weeks labs were required twice a week and have now dwindled down to every 2-3 weeks. During one of her very first set of labs we found out that she has a virus called the BK virus. Apparently this particular virus can lay dormant or can creep up and attack the kidney. It has been the most likely cause of a transplant patient losing the kidney. Rejection of course is another huge concern as it can happen at any time. For this virus to become a troublemaker it must be in the blood and urine. For a while it was just in her urine and they went to half dose of one of her anti-rejection medicines. Going down on the medicine allows for her own immune system to pick up and hopefully knock down the virus. This was working for a while. It has now come to our attention that it is back in the blood and urine so they had to stop that anti-rejection medicine all together. She is still on one so hopefully her body won’t start to attack her new(and very loved) kidney.

This past Saturday morning she woke up and said her urine smelled terrible and that it was a bit cloudy. As she has a Urostomy it is very easy for me to monitor color, clarity and volume. I told her to drink more water and see what happens. We were fortunate enough to get tickets to see a Major League baseball game and the seats were what they call Field box as they were right on the field in front of First base. My daughter really wanted to go to the game as we already made plans with my sister and my nephew(from either side of the family) I told her to keep drinking and since it was an inside ballpark being overheated was not an issue, we decided to see how the day went and call the doctor when we got home , if need be. When we got home she said Mom I did not want to complain but I am having some pain and my urine looks a little pink. We decided that we would empty it, change her ostomy bag make sure that there was not a little cut or something that would easily explain this pink color. Everything looked really good so we called the on call doctor. He stated to take extra fluids and re-evaluate in the morning. In the morning there was more blood and it was obvious sometime was not right. I called doctor again and he again told me to keep her hydrated and to call him if a fever developed. I really did not like the answer but I figured she was to see her doctor the two days later.

Without fever and the blood coming and going it did appear it was not an infection. We toughed it out until yesterday when we saw her doctor and she did full lab work and urine tests. She confirmed no infection but of course sent off for cultures which sometimes take days to grow. She is concerned but so far has not told us the next course of action. This morning there was blood again and now she fell asleep complaining of pain. She is not running a fever so I will wait until the morning but tomorrow for sure I will bring her in as they need to do an ultrasound of that kidney. I have tried to learn what could be causing this but truly I need to stop confronting Dr. Google.

A transplant is a great treatment option as quality of life can surely be improved, not being held down to diet and fluid restriction, not being tied down to a machine 3 times a week and all the other things that go along with being on dialysis. But, the truth is a transplant can be just as scary. Each and every day that she thrives is a true blessing and the days that don’t go so well are just reminders of how delicate life can be.

Her strength will brighten the saddest days

It is now 2 days before the 6 month mark of my daughter receiving her Kidney Transplant. It was a very long time coming and you can’t even imagine the emotion that goes along with it. The joy, the excitement the unknown, the fear, the realization and that is just some of it. As a parent who is been through an enormous amount of life changing events throughout my not so long yet life. I am quickly approaching 45. In the beginning of this journey with my daughter her Kidney disease was just a part of her very complicated little life. She has VATER Syndrome. This is actually an acronym for some anomalies that seem go together in similar way when a child has a Neural Tube defect. Many times this results in Spina Bifida, which has 4 different types 2 of them being non important life factors. For the most part people don’t even know they have it. They may have a dimple in a certain spot on their back that will signify that they have what they call Spina Bifida Occulta. My daughter has that and so much more. Back the the Acronym the refers to the non-random co-occurrence of birth defects Vertebral anomalies, Anal atresia, Cardiac defects, Tracheoesophageal fistula and/or Esophageal atresia, Renal and  Radial anomalies and Limb defects. There are many variables and depending on the doctor reading her scans they will refer to her condition as Sacral Agenesis or Caudal Regression. Recently I saw Sacral Dysgenesis, whatever that means. I have tried to look it up and it only refers me back to the words I have learned along the way.

My daughter has the V the A the C and the R for Renal, she also has other issues that are all part of it like the fact  that she does not have a bladder or what she has is not functional. It has not been known if in fact she has a uterus so I suppose as she develops that will either become apparent or not.Some of her Cardiac issues have been resolved just about one year ago this month when they corrected her WPW(Wolfe Parkinson White syndrome) Her Renal issues have been attended to her entire life, she was on Hemo-Dialysis for just about 8 years, during that time she had a failed kidney transplant when she was 5 years old. I have written about that before in some of my other posts if you would like to hear more about that. When she was 1 day old she had surgery to create a colostomy as she had nowhere to release her bowels, it was mixing with her twisted up insides causing it to come out in her urine. She had several reconstructive surgeries and eventually when she was 4 she had the colostomy reversed. I always knew the issues with her spine where complicated. I always focused on what was the immediate need for her to survive and be ok , that has always been the Kidney issues and dialysis, that became our lives and just yesterday we got lucky enough to run into one of our very favorite dialysis nurses and visit for a few minutes. When your life is a complicated as my daughters you see what brings out the best and worst in people. She has shown me the best in so many people.

I laugh sometimes as we walk through the hallways in the hospital of how many people know us. How many people wish my daughter well on a regular basis. How many people do we have the same conversations with Have a nice weekend see you next Tuesday and so on. It is truly amazing that this little tiny just turned 12 year old can worm her way into people’s hearts. I hear stories all the time, I remember when she was 2 or 3 and she had the Pink Birthday party, or I remember when she was NPO(nothing by mouth-belly rest) for weeks on end and would cry for water or any of the so many things that went on in the hospital over the years. We get a lot of I remember when your Daddy was alive and he used to bring you , you look just like him and well basically what I am getting at is the only people who truly know and understand what our lives are about have interacted with us in that hospital.

Now that it is 6 months Post Kidney  Transplant we are ready to start moving forward with some of her other health issues. I am waiting on a call from the surgeon’s office of when they are going to remove her Dialysis Catheter. This has been a part of her since she was just 4 years old. A tiny little thing with a line that can not get wet. She has spent her entire childhood in Florida not swimming, bathing with saran wrap as to not let that part of her body get wet as it was truly her lifeline. That line has been babied as we know how easy infection can set in a that is life threatening when you need that access to live. Over the years we did take a chance here and there one time we got the doctors to give us giant tagaderm’s and we tried cover it and go to the water park. We had a blast but it did not work out and we only stayed a short time. Once we got home had to change everything which is a  sterile procedure. I am trained to do this but I struggle so bad with getting the gloves on without getting un-sterile. Luckily nothing happened. As far as I understand it , this will be outpatient surgery. As she has had the same access spot the entire time she was on dialysis(lines changed out over wire) there is likely a lot of scar tissue so even though it’s nothing compared to her many other surgeries it is probably going to hurt or be sore a few days.

In about 4 more weeks we go back to see her Neurosurgeon that will be doing her next spinal surgery her tethered cord. That should likely be scheduled during that appointment. This surgery can not be done in our Hospital. They prefer to do this one in the other local hospital as they have a specific laser there that is the preferred tool I guess. This will be the 3rd time she is having this procedure. Last time she had it done the day after her father had a brain biopsy that resulted in Glioblastoma Brain cancer. The most aggressive kind of tumor. This was a very difficult time for our family and the details of her pain after seem to have escaped me. I remember the first two days she was in extreme pain and did not want to move at all. Then on the 4th day she popped up in the hospital bed and wanted to play with makeup. She came home on the 5th day using a wheelchair for about 2 weeks. I remember the day they both came home from the hospital. I remember her crying most of the way home and then the next two weeks are a blur.  We met the cancer doctors for my husband they stated this was terminal and his time could be days to weeks, he survived 9 months. Losing their Dad affected all three of the kids differently. For the girls they lost their biggest fan. He was Dad and for all intent purposes they lost a huge part of their support system. The older two seem to prefer not to talk about him at all it just makes them sad.  Currently we live on the second floor and we are working on transferring apartments so that after her surgery it will not be so hard for her. Moving is a huge hassle under the best circumstances but we have no resources. We have no finances at all. I recently lost my job and quite frankly my little girl needs me right now so I am in an impossible situation. We already live in an income restricted apartment complex and we are doing our best to live on as little as possible. I am sure that somehow we will figure it out. We will find a way to get our stuff moved and all will be as it is meant to be. I just have to pre worry because that is what I do best.

I can’t say that I am not concerned about this surgery, I just know what to expect more or less and now that she does not need dialysis anymore I can be confident that doing this in the other hospital will go smoothly. They did her heart surgery there and my Dad’s pacemaker and both went as expected. Well my Dad is becoming complicated but in any event the hospital did what you want them to do and they were nice to both of them so we will go into it with positive thoughts and know that Dr. G has been on the cover of magazines as a top pediatric neurosurgeon. She has done this surgery many many times and she has been involved in my daughters healthcare for most of her life. She was not the surgeon who did it the first time but she was part of their practice.

I am actually  a lot more concerned with the next two surgeries. We have to make an appointment with Urology. Currently she has a Urostomy because she has no functioning bladder. Although it is nice to see her urine output (since she never peed when she had no kidney) I would prefer if she could have that in the inside like most of the rest of us. She is just a little girl and having a big bag attached to her is not that comfortable. She does make the best of it and is very excited to know that they make swimsuits to hold the bag in place so that she can actually learn to enjoy summer activities without of the constant stare from people who will inevitably look at her and make her feel uncomfortable. After they take her line out in the next few days, we will be shopping for that suit just so she can go to the pool and not just sit out and tan for a bit. Now we take a book and sit out at the pool sometimes just because it’s part of our community and we don’t like always being inside.  The Urologist will be planning to do some type of bladder augmentation as soon as she is medically cleared to do this. Because it is dealing with her new kidney the rule was nothing for at least 6 months so at 6 months we make the appointment and start figuring it out. My guess is it will involved some type of exploratory surgery first, but with technology it may just pictures and scans to figure out their next move. I was hoping her pediatric surgeon would be the one to make these calls as he is the one reconstructed everything for her. I guess I just have learned to admire his expertise and believe that his guidance has always come in agreeance with Nephrology and they have been boss when it comes to her overall health care.  I am not sure when these surgeries will take place and I don’t know if they will come before or after her second spinal surgery.

The other Neurosurgeon involved in her healthcare is for her Scoliosis issues. Her curvature is around 63 degrees right now. In most instances doctors intervene in the 30’s some where. If possible they use braces if not surgery is required. In my daughter’s case her spine is so twisted that it is actually moving her rib cage and causing all kind of problems that will continue to get worse and could kill her if we don’t act. They are going to use stabilizing grow rods for now this will probably be sometime in place for about 2-3 years depending on how much she grows. Children with poor or no renal function do not produce the hormones that make them grow. In my daughter’s case we used growth replacement hormone shots for about 6 years they truly helped as she is about 4′ 4 now and that is small for a 12 year old but she probably would have been 3 foot something with out them. It is not likely she will grow to 5 foot but we will keep our hopes up anyway. In a couple of years she will need some serious spinal fusions to correct this curve and twist stuff she has going on.  All of this and that is what we know of never mind what we don’t know of.

My daughter has shown that she is just like every other kid only way more complicated. She likes to read, watch tv, play games, go for walks, go to shows and paint and do arts and crafts and play with friends just like any other kid. She also does typical kid things, mumble under her breath, say sarcastic comments when not getting her way and fussing with her cousins or brother. Someone is always trying to get someone else in trouble and they  do what typical cousins do, fight and argue and play and laugh and fight and argue. Although she has all these health issues today she is looking forward to going to the mall and spending her birthday gift card to her favorite store Hot Topic. She needs a really cool rock and roll t-shirt as she is going to her first real concert in a real theater in 4 more weeks.  She loves music and has been to some concerts at the park type events but this is going to be much more grown up and she can’t wait.

With all that is coming up this year, I have some serious decisions to make for myself. I have been trying to lose weight for quite some time. Part of the problem is I was so stressed out that I was not paying attention to diet. The last year of my husband’s life was complicated. Finding time to cook was just about never and he only wanted to eat fast food. (it has been proven that people with that cancer all do the same thing, eat mostly sandwiches and fast food) (probably because it is easy and does not require use of utensils) During that time, I was going back in forth 45 minutes each way to the hospital two or three times a day. Dialysis, Radiation and sometimes appointments. One day while getting ready for work I slipped on the mat out front and hurt my knee. I did not know that that I tore the meniscus after three months of suffering I finally saw a doctor, did an mri and had surgery. My husband’s illness got worse during that time and he lost the ability to use his whole left side. He could barely see or walk but he was a very energetic person and fought it with everything he had. This resulted in several falls and me and the kids would struggle to get him back up. This did not help my knee and eventually the other one wound up in the same if not worse  as the other. Over time I have had surgery on both of the knees and my right knee is shot, Doc told me just earlier this week that I need a knee replacement but due to my age insurance will not pay so basically I will be in pain for the next so many years. Being poor sucks, having crappy insurance sucks but no matter the downfalls, My daughter needs me. Having only one parent left she(my other kids need to know also but they are older and have different needs and understandings) needs to know that her needs are priority to me and that I will be there for her as long as life permits. Yes I would like a nice home, a nice car and money in my pocket to do regular normal things but the reality is she can’t do for herself right now so whatever anyone thinks or does not think is not really our problem. as long as we can keep the necessities we will find our way. So between the depression and the knee my metabolism went down to its slowest possible. I was sedentary and not eating well for far too long. Now I am consciously eating better, consciously exercising and hoping that this weight will eventually be a burden of the past.

I am hoping that during this upcoming year, that my daughters surgeries are not only a success but that they don’t bring her any undue harm. I have seen both sides of the way all of this stuff can go and I will just continue to think positive thoughts as to not screw with the JuJu as my old boss would have said. It has been a while since I updated anyone on my daughter’s health. Her blood work amazes me. Her Parathyroid problems are gone, her lab work looks as perfect as can be considering her bodies very complicated way. Thank you all for always sending positive thoughts our way and let’s hope that we figure out a way to make it all work out.

My daughter’s condition is considered rare but over the years we have found a few online support type groups and sometimes we learn from other families and sometimes they learn from us. If you are interested in learning more about her health or simply like hearing about our journey’s please feel free to read my other posts and if you are part of the wordpress community please feel free to follow me.

https://lisabarriera.wordpress.com/

 

 

 

 

To me, All Lives Matter

The picture belongs to me. My daughter and her friends.

 

 

I am truly at a loss here. I rarely watch local news. The reason I don’t watch is because it is truly overwhelming. I live in a pretty crappy part of town. I hear the cop cars, I hear gunshots, and I  hear ambulance and I see the lights from them and the fire trucks sometimes.  This is not every single day. I am thankful for that. I see it enough though. I had several options when I moved here. One was being homeless with a place to stay. My Dad was willing to help me put our stuff in storage and stay with him for a few months. He is  80 years old I could not do that. Well the other option was here. So well here we are. You may personally know me or you may have read my other posts in the past. I have three kids my oldest is on her own now, my youngest is special needs. She has been on dialysis for 8 of her 11 years and her medical condition is complicated and requires a lot of attention and a lot of hospitalizations. I became widowed about 1-1/2 years ago, making me the only one responsible for her needs as well as the bills.

Truly the apartment is great. Better than 4 of the past 5 houses I have rented recently. I live upstairs so I have less fear of people robbing the place. We do have security. I know they are only but so good but it is better than nothing and I believe that most of these shootings seem to be personal of some nature. Maybe it’s drugs? Maybe it is just being poor makes people angry. I know I get angry a lot. My situation can be described as complicating and scary , maybe no education worse people just stop believing that human life does not matter. We see all over social media, hashtag this or that life matters. People jump on the bandwagon, occasionally myself. When these people say this perhaps they mean it but do they. Why is there random shootings occurring every single day in every area all around the country. Why can’t people work things out some other way? Why do they resort to ending another’s life. When did people become so high and mighty on their own high horses and believe they get to choose another person’s last breath? To me this is a time when religious people will find meaning and say it is the time of the end other’s will say well it is our own fault, I say people in my age group, which is mid 40’s. We raised these teens and twenty somethings. For the most part they are the ones running around shooting each other.

When I was younger we fought. I was not much a fighter but had a spat or two. I surely got punched in the mouth for opening it too big and letting the words hurt someone else’s feelings. Eventually we actually became friends but one thing for sure I learned to shut my mouth when it came to stuff like that. Our friends got into fights, they beat the crap out of each other. Every now and again you would hear someone got stabbed and very very rarely did someone get shot. Truth is the few people I knew that got shot was either they shot themselves or someone playing around being stupid. I know a few lives that were lost that way. As sad as that all is it was not vicious. It was not done out of some superiority that they could end the other person’s life. I did not know this but, the other night when my daughter came for a visit. She told me it took forever to get home, something happened and I saw a lot of cops, she tells me. Turns out a cop and guy shootout right down the street. Actually in the parking lot of a local brewery. I am not sure of the outcome. I know someone is no longer here. Just not sure who was the bad guy and who was the one who lost their life. I am sure the details will eventually catch up to me. This is the second type shooting in this particular neighborhood this weekend.

I can’t imagine anyone really want’s to grieve someone they love. Sometimes we have family members who are not our favorite people but they are still ours. Just because Aunt Susie never remembers your birthday or Grandma does not know you are allergic to dairy or Uncle Stan doesn’t remember you don’t eat meat, does not mean you would hope they take a bullet on the way to the grocery store.

I happen to live in a very pretty part of the country, Florida even though I was born in New York and the lifestyle of New York will always be a part of me, Florida has grown on me in many ways. Just the beautiful birds I see regularly. The way Palm Trees wave on a windy day and the crazy Summer thunderstorms. I can’t imagine how you can be in one neighborhood and see the beauty and the next the poverty and run downess of the area.

Take my apartment complex for instance, we have a place to dispose of garbage. We don’t have to wait for pick up twice a  week. For me this is a bonus run down to the dumpster several times a day if need be. This is also a compactor so most of the time there is not an issue of it being full. Why do the people who live here throw trash on the floor? Why do they open their car door and let crap fall out and don’t bother to pick it up? Why are their fry containers sitting on the stairs. Well because the people who live here do not care. They have lost pride in the place they call home and live among people who have given up on caring.That is assuming they cared in the first place. I guess these are the same people who are slowly but surely joining this group of No Lives Matter.

In this world where it seems more and more the No Lives matter group is growing. The youth of today is not being taught that life is precious. They are not being taught to respect the differences of other people and to embrace that there is interesting things to learn from someone else who is different than yourself. They are not being taught that just because something is not going your way, does not mean you end another person’s life. Even in the big bad world of drugs, it should be simple if you have money to buy drugs , well buy them. What would make a drug dealer think that they can loan a drug addict drugs and that person is actually going to pay them back. Reality check, you lost that money! Why kill the person who did not pay you, they did not have money when they were looking for the drugs what would a few hour binge do to bring in steady income, and clearly their drug habit is already ruining their life. Why think that you want something taking it by force is the way to go? I don’t really don’t think so. When did people stop teaching their children to work hard. That if they want something they should earn it. When did hard work become something only people of the past had to do. When did this lowlife way of thinking take over. I am not sure of the particulars. I  don’t get involved in this debate over guns being legal. Criminals do not give a crap about legal so to me the fight is a waste of energy. Criminals will always have guns.

(this is the only paragraph where I added a little detail to my thought and changed a sentence or two)

I think if parents would go back to teaching their young children to love and respect themselves, to love and respect others, that would be our only chance in making progress. When people learn to work through their problems, instead of blasting the neighbor in the head with a bullet, because they stole your parking spot, or some of frivolous problem that should not result in loss of life.

I was taught to talk to people. If there is a problem try your best to talk it out. Yes, you might get punched in the face but well it’s a punch you will live through it. In life there are many many lessons to be learned. I continue to learn everyday. I spend an enormous time in the hospital. I see cops outside of kids rooms, I see gunshots victims in the pediatric area. I see abuse and I see actual disease. These are things your eyes can never forget once you see them. If every person had to spend one month living the life of someone that used to be healthy and now they took a bullet to the spine and they can no longer walk, no longer hold their urine or bowels,maybe they can no longer communicate? Then maybe they would understand that All Lives matter. The same tough guy with a gun will be reduced when experiencing the other end, the actual outcome of all those gunshots. How about a day in the Neonatal Intensive Care Unit. How about a few hours watching a family and a team of medical professionals try to save the life of a 1 lb baby that’s insides were born on the outside instead. Maybe then they would see just how precious life is? Or would they still go out and blast someone because maybe they had a warrant and did not feeling like dealing with whatever trouble they found themselves in previously.

People who need a gun in order to protect themselves to go to the grocery store, really don’t need protection. They are afraid to fight for themselves, as my Dad would say they are cowards. (he taught us girls never be a victim, don’t walk around like a victim and you won’t be a victim, if something bad happens it’s a bad event and we will figure out a way to deal with it) (My Dad is the Greatest!)  so they take a gun, just in case someone upsets them or frightens them they can shoot. These people don’t care about at all the other people affected by their way of being. When they shoot someone, they are not thinking how it is affecting that person’s Grandma, or best friend, or any other person that surely someone really loves that person, even if they did something to piss you(No Lives Matter-person) off.

I just watched a video from a Pastor, I think his name may have been Greg Locke? but I could not be for certain. I will share that I am not Christian. I have nothing against this religion I am just not it. I happened to agree with about 95% of what he had to say. He started it with exactly what I am writing about and it was so random that I saw this video. I was scrolling through Facebook hanging out with my Brother In Law we were chatting and we started talking about the recent shooting, truthfully I still had and have no clue as to what actually transpired. I did however, have this conversation. I told him I am writing an article about just that. He said watch this video I put up. So I started it and stopped right away to show him where I was so far, to show him I am on the exact same page as this guy, how random and cool is that. On the other hand it should be on the minds of everyone.

Our country is mixed up of all kinds. We are simply Americans. Until we give up being hyphenated Americans this will not change. Funny I will tell you what my family is made up of and I will not , do not and will not ever change them nor refer to them as anything other than family and Americans. So basically my heritage is European, My father’s side is mostly Hungarian, My Mother’s side Russian and Polish. My first husband’s Father, I am almost certain was From the Bahama’s but I could be wrong it is an island though for sure. His mother’s was West Indian and I am almost certain her family may have been Mexican. I don’t know the exacts but my parents were born in the United States, His parents were born here also, some of my Grandparents were born here the others came here in the early 1900’s. I am pretty sure the same for him. My second Husband was half Puerto Rican and half Italian. His mother was from Puerto Rico, not sure about her parents. His Father was born here and don’t know anything about his parents. So we have white,black, spanish and mixed, family members. My nephew’s father is from Russia came to the United States in the 90’s. I know my family is mixed up. If I start throwing in religions you will see just how mixed up we truly are. We have Jewish, Catholic, Christian, Jehovah’s Witness, Atheists and probably more that I don’t know about.

Truly we are all Americans. We don’t talk about white Aunt so and so or Black Uncle so and so, We don’t mention any of it unless we are trying to actually describe someone to someone else who does not know us. We are not hyphenated Americans. Our white side does not refer to themselves as European-American, Jewish-American, Russian-American. We are simply Americans. Our Black side does not refer to themselves as African-Americans, They don’t refer to themselves as Christian-Americans they are simply Americans. Our families had nothing in common until I brought us together. Divorced, 17 years passed and we are still family. We still talk to each other and refer each other as family. My second husband’s family is different. They don’t mention their Italian side very often, they don’t refer to themselves as anything other than Puerto Rican.Some of them do have American pride but not all of them. I always used to tell my husband you were born here you are an American. Have you been to Puerto Rico(yes when he was 2 or 3) not enough, you were born and raised here. You are an American. Yes his family came here more recently so maybe that is why they are more that way. I am not really sure. I don’t raise our daughter that way. She is American. All three of my children are mixed in some way. My two oldest are from my first husband and my youngest is from my second. Just because they are mixed does not change the fact that they are American.

I fuss with my oldest daughter all the time because she always wants to tell me something about White People, Always bringing up race cards that to me don’t exist(logically I know they exist I just choose not to let it be part of my world). If you choose to allow this to exist in your world that is your business but not in my home. I know we have differences. That is what makes the world not so boring. We are all different, even with all of our similarities. Reality is we all bleed the same. We all shit the same and we all breathe the same. There maybe be other issues that we face. I know a Black man will face certain things in his lifetime that will be specific to his struggle. I know a Jewish man will too face certain thing in his lifetime that will be specific to his struggle and so on, we could go through every nationality and religion and find these specific struggles to that ethnicity.  That is not supposed to separate people, if anything it should bring them together. This battle of separating ourselves from one another due to races and religion is pure foolishness.I will admit it is reasonable if you went to another country, you would try to find people that were similar to yourself to maybe you would not stand out or you would find some comfort zone. But in today’s age that is more of a problem than a solution. Don’t most of your religions preach peace? Don’t most Pastors, and Priests and Rabbis , etc, teach peace. Do they not teach you the 10 commandments? As far as I know religion is supposed to be a moral compass. It is supposed to guide you into spirituality and guide you to follow the laws of the land.  We are not supposed to lie, cheat, steal and murder. Ending another’s life should never be our call. I was brought into this world with only one certainty and that is I will die. I started the process of dying the moment I came into this world. Who gives another a right to decide when that process ends for me or you for that matter.

I could only hope and dream that people start teaching their children to respect one another. Teach them to work through problems. Teach them that although we all have differences there is something worth knowing about in all people. Me, being the person who forever finds good in people even when they are bad, still finds a way to teach it to my children. They argue with people just like anyone else but they never resort to any violence unless that was their last resort.If they have to resort to fighting then I expect they don’t stay hit, but I surely teach them to use their brains first. I know I can only teach my children but so much. I know that the older they get the more they will have to make these decisions about life and people on their own. I only hope the things I tried to instill worked. I stop them when they try to bring up race card, unless of course they are telling a story and that is the only way to describe. I am one with a crazy sense of humor so surely my children tell stories as crazy as I do.  My children can tell me anything and everything but they have learned what I won’t listen too, I can’t stand hearing racial type comments from my children you can’t allow it from your children or they will become more of the problem. I tell them you can’t listen to some politician to say Make America Great you have to be proud to be an American and you have to make it great. Until then I can only hope that will people will not only jump on the bandwagon( and actually do something not just on social media)and start living a life where- All Lives Matter!

This article has been edited. A comment made me self-conscious so I made a little change in wording and hope it reads better and more to the point- If you read my blog you already know focus is not my strong point!

The Time I got Married in the Neuro-ICU

Not exactly the wedding I expected, but for our relationship it is completely perfect. We were together for about 13 years. We talked about marriage many times. We had several reasons for not being married. This was not our first time around. We each had two children before we knew one another. We each had our own sets of baggage.

We had a pretty good relationship as far as things go. We rarely fought, we both shared a nutty sense of humor and we enjoyed each others company. These are the things that actually made our relationship work. Some of the baggage we had stayed with us, especially in the first couple of years. Then I got pregnant with my youngest daughter, our daughter together. By this time we truly were a family. He stepped very easily into the stepfather roll of my kids. He truly became their Dad, they always knew their father exists and my oldest has her memories. He choose to stay away from us, I guess for him that was his coping mechanism. We had contact with some of his family so it was not totally out of their lives, just not active or around.  Recently he has tried to fix it. Kids feel too little too late. But they are at least nice to one another. They had their Dad he may not had been their biological but he loved them and did what he could for them.

When our youngest was born she had many medical problems. Her health to this day is still uncertain and we overcame a lot of obstacles as people, adjusting to the way our lives changed. As the time past and continues to pass this child has been a true blessing. She has changed the way I see things. She has taught me what strength really means, she has taught me what unconditional love actually looks like. I knew what it felt like but spending a good majority of your life in a hospital, you actually witness true love. Not in the lovey dovey way but in the you can puke in front of me way and I can hold your wound sites and not puke on you kind of way. The bonds that our family gained through raising a family and a child with special needs and being surrounded by other families sharing similar type journeys is a gigantic eye opener. Will make you re-think getting behind the wheel drunk, will make you think twice about doing something totally reckless. When you experience your child fighting for their life and you look out of her room door just to look at something other than what is in front of you and you see a family saying goodbye to their family member. It is something that medical professionals and hospital employees witness regularly. They live it but they are helping and they are professionals, they have learned to push as much emotion away as they can.

Years started passing, the subject of marriage came up many times. Most people thought we were married. Most people did not know that he was not the father of all three kids. I guess if you would really look you could tell, but when you see people together for so many years they are family, so they look like family. We always put it off and we had decided that when my son turned 18 we would marry. That way I always had their last time until they were older and our youngest would understand as we all lived together. It made sense at the time.

About three years ago my husband started acting a bit strange. He started working out, which was good. He started going out more often, which was weird but good. He then started doing weird things. He loved his homing pigeons- a story for another day. One day I come home I see him in the back with some guys, I had met them before but did not know them well. I thought it was weird  but I did not interfere. I just went about my business and when they left I asked why they were there. He said Oh I sold them a couple of birds. I thought Oh thats weird we must need money, I don’t know about. I told my oldest daughter don’t you think Dad is acting weird. She said yeah I saw him drinking beer. I said maybe a midlife crisis or something. Then he started helping out the neighbors down the street. They were a freeloading family. Mother a druggie, Father a drunk. They have like 5-6 kids, they seem to love them but not more than they loved their habits. He allowed these people in our home all the time. Showering(they  had no water) eating, watching tv, playing with our kids and so on. This was really weird but well he was a nice guy so him helping people was not weird, it was just going on too much.

Our lease was up and after 9 years we were ready to live in a better house, a better neighborhood and well we were looking forward to getting older, the kids growing up and living our lives a bit more. So we got this great house, clear across town. I was working, he was working even my oldest daughter started driving and working. Things were looking up until one night the last night in the old house, he mentioned I am having a hard time seeing. I thought perhaps it was from the operations he had when he was a little boy. I did not know what it was. I made a doctor’s appointment for him. We moved and the vision was getting worse, his behavior was getting weirder and his ability to do things was clearly affected. Instead of him moving things like always he was bossing everyone around and doing nothing but cracking jokes. Him, but not him. So finally one morning he is acting really weird and I tell him I want to bring him to the emergency room. He resists and uses every excuse, he banged his head, it’s just a headache and well everything he could come up with.

So now he is in the shower and he starts screaming, he does not know where he is. I told him enough you are going to the ER. Truth is he tried no I am going to take a nap. Boy was he stubborn. Finally I get him to the hospital. The nurses in the waiting area don’t take him serious. He is having me push him in a wheelchair in and out of the place, he is on the phone and talking to people and outside smoking( a habit he had given up years before) . Finally it was his turn. The doctors checked him out and whatever they saw they knew I was not kidding about his symptoms and they did a CT Scan. This proved his brain to be very swollen and bleeding. They called for transport and rushed him to another hospital. The next three days were crazy. Test upon test and doctor upon doctor, We switched hospitals- another long story.

Now it is the day before he is to have a brain biopsy. He was very scared, as I and the whole family. He asked me, Please can we get married today. I explained to him this is not to easy to do. You have to both be present to get a marriage license and then they have the three day rule in our state. He started telling everyone that he really just wanted me to be his wife (legally) before he did this, they were cutting into his brain and well If I was not his wife before, I don’t know what I was so if it gave him comfort I was in. I was in it for the long haul with him with or without marriage. Well finally someone explained to him, if the doctor and the hospital write a letter to the court I can go to the courthouse and get all the paperwork for marriage with only one party. There were certain things that had to be proven to make it happen. Well If that man did not love me, and not want to marry me I could not tell. He called my sister at work and told her that I was going to get the license and we were going to get the social worker to marry us as she is a notary and my sister said no way. I am a notary and I am going to marry you. We will bring all everything just you relax and get ready to be married and obviously get your surgery.

So that day, I had to go back and forth to the courthouse like 3 times then rush home to do my daughters medical stuff and then back to the hospital. See not only was it going to be our wedding night, it was going to be the night before his brain surgery and two nights before our daughter’s spinal surgery- also another long story. So finally as my kids joked, Dad can’t get out of this cause he is in the ICU and they won’t let him out of his room and of course Mom you are late to your own wedding. Well I was late and if you ask my oldest daughter we had quite a lot of adventures getting all of that accomplished but we did. We got married in the hospital’s Neuro Intensive care unit. The nurses told us that my husband was the liveliest patient they ever had in that department.It was sweet  our kids and my nephew and my sister and some friends of ours were there and then his mother and sister were there also, they just came to visit before surgery and got to go to a wedding. It is not that we did not invite anyone but well we did not it was not at all planned we figured one day we could have a party or something to celebrate. He just felt like if something happened I would never know just how much he loved me. Of course he was wrong I knew for a really long time but I let him marry me anyway. Sadly his diagnosis was terminal and I lost him only 9 months later it is going on two years now. It is weird to be a widow when we only just got married. We used to joke that we did not have an anniversary we went by the amount of miles on the car. We met two days after I bought my car, which I am still driving and I just hit 179000 miles. We shared most of those together.

So now I have told you the time, I got married in the ICU.

So I get a knock on my door….

I am not sure about you but for me I find this kind of distraction annoying. I work from home. This allows me to have great opportunity to care for my family and actually not hate work. I can roll out of bed, log on start my morning get things in order and then wake up my kids. I can pretty much run my household while still being productive at work. This is a blessing that took me many many years to find. Although it is only part time and I do struggle financially , I don’t mind. I have the exact balance I need right now today. My youngest daughter has many health issues and being able to care for her needs is worth not  having the extra’s.

This morning I have been up for several hours. Working corresponding with people and simply doing my job. I went out to the living to see what my daughter is  up to and freshen my coffee. I hear a knock on my door. I was somewhat startled, but I thought maybe it was finally maintenance that I called the other day. No, it was not the maintenance, it was not friends or family. It was two ladies that I have never seen before. Right away I was regretting opening my door. The way I see it is religion is a personal thing. If you are very religious or not religious at all, you may believe, you may have faith and you may not believe at all. Either way this is you business, your choice and well, your life. As soon as I said Hi, they said Oh Good Morning,  We are hear to invite you to Jesus’s birthday party. My eyes were rolling into the back of my head and I had to politely hold them still while holding a straight face and continuing to be polite. This was not easy as I am that person who messes with telemarketers and tells jokes to random people so I hold back my sarcasticness and politely take her paper and tell them to have a nice day and shut the door.

I was doing my best not to be rude, I was doing my best to hold a straight face and not be a clown and truly I was standing there half dressed and annoyed they were distracting me from my morning.

I really don’t understand how someone can knock on my door, assume that I believe in Jesus, assume that I am interested in religion at all and then assume I would go to a party for a guy who is not going to be there. Do I bring presents? Is it a kid party? Do I need to dress up. Like give me a break. It is your way of trying to force people to come to your Kingdom Hall or Church or whatever it was, that I did not bother to find out about. I wonder how well it would go if I took my kids dressed them up like my daughter was for Halloween(she was Abaddon from the TV  SuperNatural- All red hair and bloody head cut off ) (her character was trying to be the Queen of Hell she was trying to take over and she was well pretty badass)and went around telling them I am pretty sure Lucifer is out of the cage and he wants to kill the darkness. Or I could tell them Lucifer is driving around Los Angeles I saw it on a commercial.Or worse yet I can tell them the truth, I was raised Jewish I still follow a lot of the tradition but I am not entirely sold on the whole faith thing. I am thinking someone would call the cops on me. I give it about 6 door knocks and I will be explaining to my family why one of them needs to bond me out and get my kids back from protective custody. Yet these people can knock and force their religion down my throat and that is just fine and dandy because more people are into those religions.

I  live in a crappy neighborhood, in a low income apartment complex. I don’t believe anywhere states that means I should be solicited for religion. I think it is annoying and no wonder people with money choose gated communities so no one can knock on their door unexpectedly.

On the other hand, my curiosity has me wondering  what kind of cake do they serve at Jesus’ party?  Is is a little cake like I make for my family? Is is a big fancy cake with many tiers? I am confused by this whole party thing and I am pretty sure if curiosity got the best of me and I went to such an event I would find myself at some festival where I would be expected to buy little trinkets or something like that. I am just guessing though. I really hope the next door knock is either maintenance or someone accidentally ordering us pizza.

The Versatile Blogger Award and Me…

What an honor it was to look at my notifications and see that I was nominated for the Versatile Blogger Award. I received notification from Madhurima all the way from New Zealand, she runs the Nostalgic Lemon Blog. I found her blog one day while just wanting to read about some of the shows I was just about to start Binge watching. I like what I saw and followed her. She writes about different subjects such as TV, Books to Personal Stories she shares. I was so shocked and surprised when I saw her nominate me for the Versatile Blogger award, I thank you and wholeheartedly accept the nomination.

In accepting this award there are a few small rules to follow:

So upon acceptance of the award, here are the official rules:

• Thank your nominator
• Share the award on your blog
• State 7 things about yourself
• Choose 10 new nominees who have fewer than 300 followers
• Notify them via social media

 

I have been reading blogs and truly looking to see who I would like to nominate for this award. I tell you it was not easy. I read and read. I thought about. I searched for different subjects and blogs that I would normally read. I did not search for things outside of my interest as I want to nominate those I truly feel are Versatile Bloggers. Some blogs are truly wonderful, but they are limited subject matter. Many many blogs are automatically excluded from this as their following is already past 300. My nominees will be contacted very soon.

7 things you will now know about me:

 

1. I am a terrible Movie Partner. I catch the giggles at the worst times and my attention span is short. I have been known to go to the bathroom and come back in and say random things like” What? no- one here could pause the movie for me” That either results in laughing or dirty looks. There is only one small group of moviegoers left that will put up with me, My oldest sister and my youngest daughter. Everyone else well they tell me about the movie after they  have already seen it.
2. I always find the good in people, even when they have a lot more bad than good. I believe every person, even the worst people have some good in them. Maybe they are a thief but they would carry an old lady’s groceries or maybe they are like Robin Hood, steal from the rich and give to the poor. This has not been my brightspot in life. Even when the bad is out seeking me, I tend to find reason to see the good anyway.
3. I am a HomeSchool Mom. If you know me that is not even in my personality at all. But is is true. My oldest daughter started homeschooling in the 8th grade. She was missing a lot of school with my youngest daughter being in the hospital all the time.Now my son and my youngest daughter are also homeschooled. It is a lot easier than it sounds. My son and oldest daughter attended school on the computer.(my oldest graduated several years ago) They have actual teachers that they must answer too. My youngest daughter attends Hospital Homebound so she sees the teacher 2 times a week and they send work home and I help her as she needs.
4. My life can be described a one long run-on sentence. Although I have never been properly diagnosed, I am ADHD. When in preschool, I was that child that woke every one up from nap, just because. and well 40 years later I have not changed much. I am that Mom who wakes my kids up in the middle of the night to tell them a joke. They are used to it, but I get lots of eye rolls and sarcastics Moms!!!
5. I am very sensitive. I cry for other people randomly. I had to stop reading the newspaper when I was younger because I used to cry about things all the time and it drove my late husband crazy. He would say can you read the comics or sports or something. I am not a wimp or a cry baby, as a matter of fact I am quite the opposite I just have a really compassionate sensitive side.
6. I have a great Sense of Humor. My childhood was picture perfect, my adult life has been quite a mess. My sense of humor has gotten me through, loss, divorce, raising kids and so much more. I am truly thankful that I can dish it and I can take it. I like corny jokes and sweet Romantic comedy. I have a wide variety of levels to what makes my sense of humor unique.
7. I am in my early 40’s yet I am already Divorced and Widowed. This makes for lots of reasons why my life is a run-on sentence and why I need such a great sense of humor.

 

 

Now that I have shared 7 things about me, you maybe happy to know there is more where that comes from.

Please enjoy reading my blog. Have I told you about the time….

https://lisabarriera.wordpress.com/

 

 

 

 

An Afternoon at the Horse Races…

My sister got her hands on some VIP tickets to the races. The last time I was at a race was in the late 80’s in New York. We actually lived off the same exit as the Belmont. I remember my Mother used to love to go the races. I also remember going to the OTB with my father and Uncle and I may even have a memory of my grandfather. It is also possible that I made that part up. That is the funny thing about memories. They say once it is in your memory it is yours forever. I know this may be true but some part of reality must kick in and remind us that we can’t possibly  remember every detail of every event of our lives. So maybe I knew my Grandfather was visiting and I went with my Dad and Uncle? I can’t really be clear of the details. Either way it is not something I did many times in my life but I do have specific memories of doing them.

I tried to convince my teenage son to come with us. He has never been and he is like a vampire, hates going out and even more hates going out in the sun. Growing up in Florida you learn early that come March-September you do things early in the morning and late at night. Unless of course you are in the mood for beach or sunny type experience. Well he did not go, that was ok we had plenty fun without him and he decided to help some family members with moving some items to storage so he inevitably left home anyway. So it was my Dad, my sister and my daughter. Our age differences are surely there. My daughter being the youngest at 11 and my Dad well he is old. Me and my sister are half in between and we still all managed to enjoy the exact same event. That is pretty cool in my book. Still doing fun things with my Dad, even though he is very stubborn, he should be out of the sun, staying hydrated and not running around like a kid. Well he stays in the sun, takes pictures standing directly in the middle of everything and well he makes us all nervous. We can’t tell him much he won’t listen anyway. When the time comes that he has medical issues and we have to tell him No Dad you can’t do that, he will complain for many hours even if he does realize that we are right. I only hope I am as cool as he is over my remaining years.

I mentioned earlier that my sister had VIP tickets. This meant that we could pretty much sit wherever we wanted in the pretty good seats and that we each got a free 2 dollar bet.So we look through the program and choose who we will bet on. All of us picking different horses.

First race my horse is ahead by at least a full horse length. This lasted right until the last turn and two other horses took him and bye bye to my free bet. My daughters ticket was also a bust and so on for my Dad and Sister. I bet another 6 bucks and I am not sure how much they bet. I came up losing on every single race. My sister won one 3rd place I think and won like 3 bucks and my Dad wound up winning 10 or 11 dollars. So all and all it was not a day that made us rich but, who would think 2 dollar bets would bring in the big dollars. All and all I did not go to make money. I went to spend time with my Family. I went to show my daughter something she has never experienced and apparently I went to smell lots of Cigar smoke. Who knew so many people were so into Cigars in the mid day time at a horse race. I guess people who frequent these places would know. I was not one of those people. I mentioned to my Dad that I think the horse races would smell better if we went back to a time where people smoked lots of pipe tobacco. This was a very sweet smell if I remember correctly. He laughed said he agreed and that I was really nuts. That is something he says pretty regularly to me. All and All it was a very nice day. For the last two races we went down to the front and stood right  where the horses run. They are such beautiful animals and always hear stories of them being abused for the racing industry. They sure did not seem abused to me, but who am I, a mere spectator with pretty much no knowledge of horses or the Horse racing industry. I do hope that they are treated well. I would like to attend the fancy Horse race some day, The Belmont Stakes or the Kentucky Derby, wear a really flowery dress and a big fancy floppy hat. I could jump up and down and pretend like I had money to bet in those races. Ahhh a girl can dream right………..

 

 

 

Do you catch the Giggles? Or is it Just me?

I don’t know if I am the only one who catches a case of the giggles at the oddest times. Dare you take me to a movie. It can be the most serious, or a love scene and something random will come to mind, such as: Forest Gump yelling Jenny – not exactly sure why this is so funny to me, but when it is a very serious time I will just see him running with sweat dripping down screaming Jenny and it makes me laugh. Another sure to crack me up is Armpits! Have you ever seen the movie Captain Corelli’s Mandolin? Well there is a scene that is supposed to be like a love scene all serious, and Penelope Cruz just lifts her arm and there it was a big bush of armpit hair. I was just not expecting it and well – Giggles, my sisters each elbowed me from the side to not giggle only to realize it was funny and they giggled to. Now all I have to do is look at my sister and point to my armpit and she will giggle. I use this to my advantage when she is trying to be serious.

It seems I have passed this on to my children. I laugh now while I write this all over again. See yesterday was a pretty crappy day. My daughter who recently had a Kidney Transplant about 90 days ago had a fever. She had been complaining of stomach pain and even though the doctors just checked her out two days before she needed to be seen again. They wanted me to bring her to the Emergency room as if something is going on they can treat right away. Our Doc called down so we did not have to be in the waiting room(she has a very weakened immune system right now) So as you know the way the Emergency Rooms work, you have to get through the registration process and through the Triage Nurses before you get anywhere. Although we did not wait more than 10 minutes we were caught by the giggles. There we were in the least crowded area and a couple or so it would seem comes and sits down, kind of in the middle of the room from where we were in the corner. Of course straight in our visual path and they were dressed very nice and strangely they sat with spaces in between. Neither were large people so it struck me odd. Me and my daughter just look at one another and realize we both noticed the same thing. We sat there quietly while the show unfolded. They were fussing about what ever brought their child into the ER. She was commenting about I can’t believe my kid did that and He responded with Our kid and well(inserting small eye roll) just in the middle her cell phone started ringing some banjo sounding ring tone and there it was Gigglepalooza. We tried not to laugh and just when we composed ourselves hoping they were busy enough in their own foolishness for us to be caught clearly giggling at them, the phone rang again. We did our best to contain ourselves and we were very thankfully saved by the nurse who came to bring us to the back.

For the rest of the afternoon, which was not to much fun, they consisted of IV fluids and 2 IV antibiotics and 2 IV doses of Benadryl, I had a sleepy and on and off cranky kid who thankfully is a really happy kid. When she started getting mad I just acted like I was playing an air banjo and she started to giggle again. She is still sleeping now as she is not at her best and all that benadryl really had her wiped out, but when she wakes up it surely will be to me pretending like I have my air banjo.

This is surely not the only time when cases of the giggles have gotten the best of me. I can remember being a teenager and my friends Mom saying are you ever not happy or laughing at something. Wish life was simpler and I could really still be that way. If you know anything about me you would know that I had to be that way to be able to put up with what was coming ahead. I am glad it is a positive coping mechanism, surely better than the alternatives…..

 

I am kind of worried now.

My daughter is almost 12, she just had a kidney transplant just about 90 days ago. I was looking forward to these days as the farther away from transplant the less likely the body will reject the organ. Just  yesterday we went in for labs, and everything seemed pretty good.

Around 4:30 her eyes looked glassy to me, so I felt her head. I thought gee, you are a little warm so I took her temp it was not really high but higher than normal. I just watched her she has been incredibly irritable the past two days and I thought that was maybe some of her medication. Then she started complaining of a headache and last night she mentioned her stomach hurting several times. Each time it seemed to pass after a while she would feel ok and then go back to complaining. Since her temp was not high I decided I would call Dr in the morning depending on how the night went. She slept really good.

When she got up she said she did not feel good and that her Urostomy was leaking. We changed and cleaned up. When changing the bag she complained of some tenderness. I called the doc and I was told to watch her. All day she was just not her self and now her temp is totally down, but she is shaking and complaining of stomach pain again. I talked to the doc and she is pretty sure she wanted me to bring her into the ER. She said wait a couple hours and see and if she is still feeling crappy call her back and she will see if she can see her in the clinic or if I should head over to the hospital. She felt in the hospital she can better, quicker labs and if needed she can ultrasound the kidney. I wish I did not have to feel so panicked but after watching your baby on dialysis for 8 years it is kind of hard to imagine her losing the Kidney after only 90 days.

Well here is to hoping for the best and trusting in our doctors that they know what they are doing. Any minute my phone will ring and she will decide where we are going. Since it is 5 in the afternoon my guess is off to the hospital we go.

 

I am addicted to NetFlix

About a year ago I decided that I am giving up Cable Television. I decided that it is too expensive and that I spend more time looking for something to watch than watching anything. I did not want to give it up for two reasons, sports and local news. Well I have clearly moved past all that. I now look online for results of things. I do miss the sports sometimes, but I enjoy Hockey Radio. It is exciting, it reminds me of being a kid. We would not want to miss our beloved New York Rangers, but living on the Island we not getting to watch many games on TV.

I have many shows that I can easily watch on Netflix. I can binge when I want and I truly am addicted to that. Right now I am totally caught up on several shows and I feel like eww, I have nothing to watch. I can binge watch  some shows all day but others I need a break and have to start something else. My kids and I agree on some and not on all. Mostly my youngest daughter will follow my lead and watch whatever I choose. My son is not that way at all. He has turned into his Dad. When my husband was alive he controlled the tv. He even controlled what the kids watched in the other room, unless I was home and then those rules did not apply. He would always say, Lisa go in the room and tell the kids watch whatever you want. Dad is a jerk and he just wants you to watch certain shows,  but I am home now watch whatever. He was an at home Dad for quite a few years and he would have to be the jerk sometimes. He liked Good Cop Bad Cop, Always one of us had to be nice if the other was mad about something. I miss him. I am now trying to play good cop bad cop alone and the kids just roll their eyes and wish they would come take me away in the White Coats, to the funny farm, where life is beautiful all the time…..

There I go, off topic as always. So My son surprised me with some of the shows he wanted me to watch, to catch up on so we could chat about it. He turned us on to Supernatural which has become a favorite show to leave on in the back ground when I am cooking and working or doing other stuff. People who don’t watch it perceive it to be Dark, Negative or to religious. It is truly not any of the above. It is like a story of brothers who will change the entire world and beyond,will literally go to other realms if you will, to help each other and they fight stuff and are hot, so it is fun. He also got us into, Grey’s Anatomy, House, Private Practice, Sherlock and some others. I got him into Breaking Bad and Weeds, I know some Parents would not approve. My son is 16. He has literally seen just about everything on Netflix and Hulu and he has never once became any of those characters. He also plays video games but does not go outside and shoot up the neighbors. We have always been an open family about things and my kids have grown up in bad neighborhoods their whole lives. Me sheltering them from the real world would bring them more harm than good in these environments. Yes, in a good wholesome neighborhood I may have tried to shelter them until they were older but to me that was not in the cards.  Anyway back to Netflix my Son has great taste. So far I have not hated any of the shows, as a matter of fact I have loved most of them. I mentioned Supernatural but Grey’s Anatomy has become part of my family in a way. First thing at 6 this morning my son comes in my room. Mom I can’t believe Jackson did not marry that Tatianna girl. I knew exactly what he was talking about and sure enough my daughter chimed in with an I know , really. I adore my kids and strangely I think our NetFlix addiction has brought us closer.

I have watched my son, go from wanting to be a Diagnostic Doctor, To a soldier, to a Criminal to FBI and on to a Politician. I think that my little daughter has had her eyes opened to so many fun stories, We watched Once Upon a Time the entire series to it’s current now in like 9 days. We were totally hooked… Get it hooked(The character Hook) Yes I have a very corny sense of humor. I know some wish I would just stop, but yet I never do.

Hope I am not the only one totally addicted to Netflix but I believe it beats the alternatives, I was considering.

Sunday mornings random thoughts…

When I wake up feeling pretty good, I like to take advantage. I get up start my coffee, clean up the mess my son leaves overnight in the kitchen. If the weather and my knees permit, I like to go for a morning walk. I don’t like to walk in the heat or pouring rain. This morning was perfect. I got up and said wow it’s sunny and cold a perfect morning for a walk.

I grew up in New York. Long Island until I was 12 and then Queens. I was by nature a city girl. I love the excitement of it all and I most especially loved the people watching. My friends and I would go into “The City”(Manhattan) , go to Washington Square Park and people watch. I am sure we did more stuff but that is what my memories like to serve me.

With that being said I am the kind of person who say’s Good Morning, or Hi. I usually smile and go on about my business. I do not expect people that are random strangers to stop their lives to politely give me small talk. I do, however expect a simple return smile or a quick Hi.

Is that a lost way? Do people not say Hi to random strangers? Do they not start their day’s off looking for a way to have a good one? I am so confused. I walk past so many people on an everyday basis and I smile and say Hi to most of them. The ones I do not smile and say Hi to are the ones who never smile back. I have neighbors that walk down the stairs with me most mornings and won’t utter a Good Morning back. Now I choose to walk behind them so I don’t have to let them see the disappointment on my face. Why I allow this to disappoint me I have no clue. I just am friendly and kind and prefer to be around like minded people.

I have been told over and over what Rude people New Yorkers are. I am usually appalled by it. Perhaps it is just my own personal experiences. I really don’t know but I have been in Florida for 24 years now. I have yet to live in a neighborhood with friendly people. I have had friendly neighbors after I forced my friendliness on them. I am not aggressive by any means but I am persistent.

I really thought when I moved into my current apartment complex that I would meet some nice people. I thought there people here are basically in the same financial boat as me. Likely there are a lot of single parents as this is an income restricted complex. Boy was I wrong the people here are mostly rude. I just walked past two neighbors in the hallway that were so busy not saying Hi back that they damn near fell down the steps. I walked past a young girl, perhaps 14 or 15 I smiled and said Good Morning, Nice morning for a walk and she rolled her eyes at me.

I sure hope my experiences are limited and that there are still polite, friendly people walking this earth. Either way, I always see it this way. When I go to bed at night , I have no concern that I have brought anyone else any harm for that day. I feel like I did my best to be a good person and be nice and polite to people. So I don’t lose sleep over it, but it does sadden me to know that something a easy as a smile is something people even young people just don’t do. Perhaps they do it only in closed enviornments? Maybe their families have thought them that everyone is a stranger and horrible people so never smile , never be nice to random people? I don’t know but surely one thing I know I will keep being me. I will keep doing the same things I do and hopefully maybe just maybe it will rub off on others.

The Journey to my Daughter’s Kidney Transplant

Part 1

 

My daughter is almost 12. She was born with a condition called VACTERL/VATER or Sacral Agenesis or Caudal Regression. They all basically mean the same thing. They basically mean that my little one is really complicated. Her first 48 hours started off with fear, surgery, uncertainty and some more fear. They also started with Love. You can’t imagine the emotion seeing your tiny little person so sick and so helpless, yet so full of life. She may have been complicated but she sure was a little  fighter. Time past and we learned of just what all this would mean and the amount of actual health-care she would need just to be ok.

It was in those first few days that we learned about her Kidney’s. We actually knew from sonograms that she was likely to have Kidney problems. We were also told people live with one Kidney. We did not make that our biggest concern at the time. The next 4 years we learned so many things. We watched her endure, surgery after surgery, sickness after sickness, pain after pain. When she was 3 we watched her Kidney Function go down. By the time she was 4 it was obvious that she would be on dialysis before to much longer.

When she was 4 she had her dialysis catheter placed and she started dialysis that day. By the time she was 5 we had gone to LifeLink for Transplant evaluation and to see if either myself or her Dad would be a match. Neither of us was a match for her. The few family members that would have been willing to test for her, had other health issues that automatically disqualified them. A living donor from a family member was not in the cards. That was not the worst news. There was good news. She was an excellent candidate for a cadaver donor. Although no one likes the idea that someone will die for you to live, the reality is that person will die anyway and they or their family chose to make the worst possible scenario, a little less, not so bad.  As my daughter was so young and had already endured so many health issues she was placed fairly high on the transplant list.

Just over a year on dialysis, we got “The Call”. I will never forget when the phone rang early in the morning. We were all up, I was getting ready for work, we were all getting ready for dialysis and school. My husband saw the phone and right away recognized the phone number as he was the one taking her to dialysis and appointments while I worked(there are lots of stories inserted here for future reference), He told me, Get the phone it’s yours ringing. (as I later found out he already told the Doctors, like she is always at work and feels bad that she does not go to dialysis please call her when the call comes) So I answer and I start crying like the sap that  I am . So instead of going to work and school, we ditch the book bags and all head to the hospital. They do a normal dialysis treatment, and everyone is talking and excited and there is so much going on. Our unit was blessed with not one match, but two. My daughter and another little boy(her kidney brother as we fondly call him) were to receive a kidney that day back to back. My daughter was second as she is more complicated and well I don’t really know why but that was the decision they made for whatever reason they made it.

I remember making phone calls, my Dad, my sisters, my job and so on. I remember one of the supervisors at my job telling me that everything is not as easy as I am making it sound so I should prepare myself that this is a big surgery for my daughter. I remember thinking why is she always such a bitch. Well in turn she was right. The surgery went off perfectly. The surgeon was pleased with the way things went and off to ICU she went and we not very patiently waiting to be able to see her. Soon enough we were all really excited, looking forward to everything positive that would come from her having healthy kidney. It was something we just can’t describe unless you truly witness and experience on a personal level. The gratitude for the family that made the unselfish decision to donate. The gratitude for top of the line surgeons that can get a kidney in a child that has no bladder and everything has totally been re-constructed.

That night she started producing urine. The doctors were ok with the amount but not thrilled. They told us that she is so sedated that we should go home and rest as when she starts waking up it will hurt and she will need tons of attention getting her comfortable. We listened. Very early the next morning we went back to the hospital. Sat quietly with her and waited for the doctors. They said that the kidney needs to wake up. This is not uncommon and there are big technical words to describe and explain all this. They continued to work at getting her kidney going. Lots of going ons. Finally she started waking up and they were able to get her off the vent. This was a fabulous day. We were so happy to see a little progress after several days of watching her basically sedated.

When we put her to bed everything was really looking up. Nurses assured us go home. Better for the kids to sleep in their bed than sleep in the waiting room. They need to have somewhat of a normal life. Well well all went home. It was my husband, the girls and my son and we were tired, excited and hopeful. We Just got home and we were hungry we started making some scrambled eggs. Just the second I flipped off the the stove the phone rang. It was the nurse. She said  you should get back to the hospital, you daughter had an episode, she stopped breathing and we are putting her back on the vent. We flew out of the house so fast that we literally arrived, with the kids upstairs as they were still intubating her. It was the scariest possible moment I ever could tell you about, except if I keep writing and I fast forward 6 almost 7 years later, I will tell you so many more scary and even scarier moments.

So, now the next 9 weeks pass. She is on and off the vent for various reasons. She is back on dialysis. Our dialysis nurse was our save all. The only time we felt comfortable actually going home and being home for 3 hours together. The doctors still held  high hopes the kidney would recover. A biopsy revealed that their hopes were founded. This kidney should recover. We watched and worried and hoped. Each day passed and those hopes started to fade. After the initial night that she had the breathing event, I spent every night in the hospital. Feeling like I would neglect one child for the next I struggled with the whole situation I was facing. My daughters health was literally in the balance. I would sit in the morning when the doctors would do rounds and listen. I would hear these brilliant voices discussing my child. They would talk if we do this , this will happen and if we adjust would this cause this to happen. It was like she was a puzzle that required great intelligence as well as balance. You must piece together this puzzle while you stand on a balance beam suspended in the air. That was what I saw. I continued to gain admiration for my daughters medical staff. I continued to be thankful for my family. My husband forced me to toughen up and be brave so I can take whatever may come. I would cry to him and he would cry to me and then we would say no time for crying, time for being tough. We were but our family struggled. We had two children suffering, with being distracted in school or missing school. We had one child who’s life was supposed to be getting better get worse.

 

During that 9 weeks, eventually she did lose the kidney. After everything she went through. Us watching her in a medically induced coma for so long and her being on life support caused fluid in the lungs and things were truly not looking good. Our doctors knew that they must piece together this puzzle and balance and that she would eventually be ok. After they removed the failing kidney they were able to get her back to her normal with dialysis and lots of medication in a few short weeks. ….

For more of our Journey through Kidney Transplant see Part 2

Cancer! You Suck!

Again, I have to accept the fact the cancer has reared it’s ugly head to someone else I love dearly. This person is probably the person I love the most in the entire world, My Dad. I have so much love for my other family members, but my Dad has always been the one to I wanted to hang out with.

When I was a child I was the youngest. I was the one that was different. I lived among a family who believed very much that love is something you don’t need to talk about. Showy love is for some but not everyone. I was told by my Mom, Lisa do you have a roof over your head, clothes on your back, food in your house, is it cold in here? Is there any time you have gone with out by necessity? I would of course say no. She would then tell me that is love. Why in the world we would work hard to make sure you are all ok, do things we think will teach you about life, culture and a little of everything in between. That is love. Love is not something you can describe in a word. Love is a action. It is something that you do always when you really love. So I did know and understand but I still wanted to be told and I still wanted to be the huggy kissy one, as my sisters would say. I would kiss the relatives and hug them when they would come and go. Typically they probably thought I was annoying. I guess I was.

My Uncle , he never cared though he would say get off me you little monkey and pat me on the head. When I got older I realized that I was the one who liked to do these things. They did not so what. Why should I stop being me because someone else is them. I never did and still do not. Now that I am older I realize that love for family is not something that you have to do. It is something that should simply come naturally. If it does not come naturally then it should not be. I have relatives that I don’t really think give a crap about any of my family, only their extensions of it. That is ok. I used to be offended now I could care less. I wish them the best and I am sure that if we found ourselves together we would enjoy one another’s company. Life just gets in the way, likely it is not personal.

I mention my family ties and a little about me for a couple of reasons. One I am easily distracted. I can go from one topic to another, well almost accidentally. Other reasons are ,I want it to be known that I feel, and always felt that I have a small family. My Mother’s side was small to me. Many of my Aunt’s passed a away before I ever got to know them. Cancer. These ladies were my mother’s cousins but they grew up in the same household so they were sister’s, sort of. The older relatives, grandparents and their siblings passed over the years. I will admit I am fortunate in saying three of my four grandparents lived to pretty old ages. By standard at least. Grandparents on Dad’s side- Cancer. Not really sure was my grandfather on my Mom’s side. He passed before me and my sisters were born and I am not really sure from what. He was sick and for a long time and he likely had -Cancer but I really don’t know. My Mom always said he was really sick. I don’t know. The only grandparent who did not die of cancer was my Mom’s Mom. She lived to the ripe old age of 93. She did have Alzheimer’s and  she did suffer a few strokes and the effects of that, but she was not a cancer victim. My Dad is like the main important person in our family. For me, for my sisters, for our kids.  My husband also another victim of cancer used to say, I met you Lisa so your Dad could be my Dad. He is the greatest guy ever. He would say I make my self a better person because I see how much a better person gets loved by his family. He thought he was great, because he is and that is the other reasons I wanted to mention a little of our back story.

My Mom passed 15 years ago, she had heart disease. It could easily be argued that her smoking habit caused this heart disease. I believe she would agree to that statement. I know she was being checked on for cancer but the heart disease became the precedence.

I have seen cancer and the outcomes of it many many times. Seems to me this damn disease has no boundaries. I have seen skin cancer on at least 5 people I know. My Dad included, my sister included. My husbands sister and a few other people I have known. I have seen stomach and lung cancer, I have seen brain cancer I have seen lung cancer spread to brain cancer and breast cancer and well I could just go on and on. Now my own father, my top dog, my superhero dad who always knows the answer and always as a joke to go with your issues, now has this threat hanging over his head. I will add my Dad is approaching 80. He is about to get a pacemaker but his actual heart muscle’s are quite strong, says a very trusted cardiology group so I will believe that the pacemaker, will help him to feel better. But prostate cancer. Docs are saying in beginning and very very good chance as long as it has not spread. Now the days will feel very long until he has those tests and awaits those answers.

It has been only one years since my husband’ s passing, but it has been going on my entire life. I am always grieving the loss of someone. Just recently it has been the loss of the ones I have been closer too. It seems that my little family only gets littler. I wish there was a way for me to be the hero. I could find a way to save my Dad from any ill affects of this disease. I truly believed my husband, could fight brain cancer. I believed he was this guy who could fight his way out of anything, and win. He could win an argument that he is wrong, He can win a fight with a guy, who is bigger and stronger and well he is just Ray. Glioblastoma,  a stage 4 brain cancer is a monster of all monsters. It has tentacle like appendages that grow into the brain, not out like a typical tumor. This disease was found far to late. From every bit of research I did I could not find a way to save him of this horrible disease. If there was a way me and my oldest daughter would have found it . We believed in knowledge is power and we tried. We are naive, obviously but truth is we just loved him. Now I find myself reading everything I can about a disease I know very little about. During all my research it was specific to the disease he had or my daughters medical conditions, as she is special needs. Now I have to learn about this one. I realize that this is different. This has several different treatment options. My sister was with my Dad at this appointment and she said the doctors are very hopeful. They were urology not oncology so again we wait. I have played this waiting game before and I don’t like it. I have no choice though.

My poor Dad, He had to live life after losing his wife. She died right when they were supposed to start really having fun. They raised their family. They had grand kids. Retirement was heading in the right directions and then Bang, No more wife. Enter the widower’s club. A crappy place to be but like anything else , you learn to live again. My Dad was pretty fortunate in that area. He is handsome, friendly, funny and can fend for himself. As a matter of fact my father does not want to be catered to does not expect it and would probably be put off by it.I am glad he lived. He traveled some places my mother was not interested in, that he was. He spent time learning how to be a single guy and I think he did a great job. I continued to be Dad, Grandpa, and brother to his remaining close family and he is an Uncle to many who are well, not so close. He is also a friend. My Dad, has more friends than I could count and I am always so sad for him when he tells me that one is no more. The older you get the more often you will experience that type of loss as death is the only outcome for life. I am pretty sure my Dad has more life to live. His doctors have not led him to believe otherwise. I do not believe any medical professional gives false hope. I believe they base your prognosis on the facts presented to them.

I am kind of overwhelmed by this information though. I think wow why does Cancer just keep on affecting people. My people. I know I am not the only one. I sound selfish, but truly I am not. I am just sad by the fact that my has to feel pain. He has to endure treatments. He has to put up with peoples personalities and after experiencing the amazing radiation tech’s my husband had to the horrible infusion techs he had I know it will be only wishful thinking to expect something totally different, although I will hope for it anyway.

Damn Cancer- You suck Go away already!!!!

525600 Minutes- Just like in Rent!

https://youtu.be/s1c3MARlJ0Q This is a link to the song referenced in the Title.

I don’t know if you have seen Rent? I only saw it about 2 years ago for the first time, but I have seen it many times since. I first saw it live in a high school performance. I was blown away that such an emotional show was put on by such a young age group of performers.

The reason I had this song on my mind is right now when I started this post it was literally 525615 minutes from when my husband passed away. He slipped into a coma about 4-5 days before he passed. He was in hospice(in an actual hospice house) for about 9 days total.

I can’t even express the emotions that I have felt over these last minutes, days, months. It has been one year. I never thought I would make it one minute and here I am alive. I am handling it, each day brings different emotions. Someday’s I miss him almost desperately, other days I enjoy the fact that I had the opportunity to love and be loved. I don’t really know how else I am supposed to feel. I did not know if I would ever take off my wedding band? would I switch hands? What would I do with that unknown emotion and process? Well over that year I figured it out about two weeks ago. I had to change my medications and I am retaining some fluids. My fingers are swollen and although my diamond fits just fine my band is too snug to be comfortable and I had to take it off. At least that unknown was answered for me.

Over the course of this year. I have lost my husband. My kids lost their Dad. I took a chance I quit my really crappy job for a chance at a better job. I worked just a few short months and I got axed because they did not want to invest the time in expanding the position. It was a starter position. They give me 100 phone numbers to call. They expected me to continue to call these same numbers for almost 9 weeks. I was through the 100 numbers ever 2-3 shifts. I was set up to fail and I did fail. First time in my life something like that ever happened. I have always been successful where ever I have worked. Most people either know me from School or know my from somewhere I worked. I believe most would attest I am a hard worker. I have experienced true financial hardship during this time. I have taken my daughter to dialysis 156 times this year. We have gone to more appointments than I can count. I have disassociated myself from all of my husbands family except 1 brother and his family and his half-sister whom I only got to meet one time. We keep in touch via the internet and I am glad that we have gotten to know each other a little at least. I have pretty much had to learn how to be single again. It is not like a single, like a break up and you want to move on, date other people, make changes. Being widowed is more like you are being forced to deal with all these changes that you really did not plan for nor want.  That is a lot of things that were not that great this past year. I found out I need a knee replacement in one leg, Had knee surgery on the other leg, and found out that will need replaced as well.

Now for some of the better things that happened over these 525600 minutes:

My son completed 8 and 9th grade on the computer doing virtual school. He also learned how to take care of the yard, fix things around the house, help with the laundry and basically take over some of the things that Dad would do. Like making sure his little sister is not doing anything she is not supposed to. He takes care of the dog and the bearded dragon and he is showing signs that he will have many success’ in his life.

My oldest daughter moved out and moved back in and is getting ready to move out again. She has gone from taking her Dad’s death very hard to working , working on relationships and moving forward with her life. She has learned to move past some things that were holding her back and she is showing some signs of true adulthood. I look forward to seeing where life will take her.

My youngest has brought her reading up 3 grade levels. She has gone from refusing to discuss school and reading to, hey Grandpa can you buy me this book I am interested in. She has attended 156 life saving dialysis treatments. She has finally met the medical goals she has been working towards to be re-listed on the kidney transplant list.

Our dog has gone from a little puppy to a big 70 pound bundle of playfulness. He has learned so many things. Tricks are not one of them. Sitting is though and we are proud of our boy. He sit’s like a scholar, just ask his loving siblings if that is how he would refer to them?

I could go on and on with all the things that have happened. So many details,

I saw my family experience true grief. I sit here now with tears on and off. I miss my husband. I miss his touch, his smile, his need to debate, his smell, there are so many things to miss. I know my kids have a hard time. We all have pretty good sense of humors and we take advantage of that. We need to. Life has dealt us some pretty difficult situations and we continue to adjust. As humans this is what we do, adjust, adapt, call it what you will but that is what we do.

In Rent, Angel went from this fun-loving, lively, energetic character to the end of his life. All of the characters have hurdles to jump and emotions and problems to work on. A year sure changes a lot in their lives and a lot in mine.

I do, so enjoy seeing Rent. The characters had me at the opening act. I couldn’t pick a favorite part but I have been known to randomly sing out, Jump Over the Moon. So that might be an indicator of a favorite scene.

I am hoping that anyone who read’s this will look at their 525600 minutes and see what happened with theirs.  I know for my self just writing this opened my eyes, see I started this while tears were streaming down, all I could think of was wow last year exactly now I was dealing with losing him. It is one of the worst things that can happen. Lose someone you love to a horrible disease. There was not one thing we could do to change it either. I also realized that my little unit is pretty strong. My kids whether the storms. They have learned to buckle down and I am nothing short of proud of them. I also learned that among all the bad things we had to go through we went through some good ones too.

Steroid Psychosis- a personal experience

There are some things in life we don’t ever believe we would have to experience. Not only do we not believe we would experience them, but we don’t even focus on the the fact that these things could happen. Why would we? I don’t know but I did experience this and there are many times that I believe me and my children we traumatized by this entire experience.

My husband, was a really great guy. Sure he had his issues, and maybe even a little more than the next guy but he did not deserve to leave this earth the way he did. Well in his opinion he did. He always said,”I have done a lot of bad things and I will die a miserable death from some horrible disease.” I would get angry and tell him shut up, you are being dramatic. Well he must have had great instincts, in fact he did but who would think that great. In November 2013 he was diagnosed with stage 4 brain cancer(glioblastoma). This is the most deadly and aggressive brain cancers a person can get. Sadly by the time we found out treatment was only a way to delay the inevitable. He did fight with everything a person could fight with. He did have his ups and downs and he did pass on knowing just how much his wife and kids loved him and a few other people as well.

When I took him to the emergency room, the staff(front desk) thought he was over reacting. They saw him going in and out of the front doors. He kept sneaking cigarettes(he had quit for a very long time but some how right before we knew he was sick he started again) He was on the phone and talking and joking and being himself. However, I knew that he was very sick. I knew the crap he was talking was not really making sense. I knew that the time frames he would be referring to were not current and he was not seeing correctly. He was walking into things and other signs only someone who knew him would notice.

When he finally saw a nurse they saw his heart beat was extremely low. This concerned them. I told them he is very sick. Terrible headaches and he is confused and so on. They agreed to do an MRI. I guess they saw something when assessing him that they agreed something was going on. Once they did the MRI, the doctor came in and said we have an ambulance on the way, you are being transferred to another hospital. Your brain is very swollen and we see a lot of blood. We don’t even know how you are walking and talking. At that moment he passed out and I had to soak in the information and try to comfort him. I made the pertinent phone calls and went to pick my son from school and bring him to my daughters who were both at home. I told them what was going on and went to the other hospital. After a few days we transferred hospitals again only to get the proper diagnosis.

After the brain biopsy a few days later we went home. We had the first appointment with the cancer center. We were told by the oncologist, that with out treatment he has days to weeks to live. He opted for the chemo and radiation. This bought him 9 months and I am very happy he did. Funny that I started this off explaining that we should be traumatized but I have not told you why. The reason for this is I want you to understand the back story a little. We were in love and we had our issues but who does not. Our kids were scared they loved their Dad and I was scared also. We banded together to make this as comfortable for him as possible.

This is the part that gets crazy. At first they started him on a lowish dose of Decadron. This is a very potent steroid. This is the kind of medicine that if not monitored properly will make a person insane and violent. They call this steroid psychosis. The doctors or nurses or anyone else mention this to the patient or the family. For a guy whose brain was shot he was pretty in tact. When he was on the low does I would joke and say here honey I have your cocaine ready. Time for you to run around the house and clean. He did this for weeks. He had fun cleaning it was easy for him to do and kept him busy. After about 3 weeks we noticed he was becoming a little obsessive about it. We also notices that he was easily annoyed. We mentioned to the doctor. We were told this is probably from the brain cancer and we should expect a lot of ups and downs with his personality.

Weeks are passing. His health is up and down as they said they kept increasing the steroids to deal with the increase of the swelling in his brain. After this whole nightmare ended we were told that this is a necessary evil. Well now he was starting to get really hyper. He would want to exercise and smoke cigarettes, he would want to eat every 2 hours and clean and go here and go there. He was literally running me to the ground as in between taking him back and forth to chemo and radiation and all of his extra and I do mean extra curricular activities, I had to take care of my kids, I had to take my daughter to dialysis three times a week and deal with all of her medical issues. I also worked part time and had a torn meniscus(knee) and required surgery. I was at my wits end and he would be more and more hyper. When I say hyper I mean. Lets paint the house(that we rent), Lets re arrange the furniture. Lets go here and there and back again. Lets clean out the garage. Lets go to the casino, Lets go and lets go. I could not go for much longer when he started becoming weird. At first it was my son who had it the worst. He would start talking to him about the bible. He was saying weird things and insisting he saw angels. Then he started forcing my son to pray. I mean pray out loud prayers he does not know, never learned and never needed to learn as I am Jewish and our kids are raised that way. He then started on all of us. He would be very nice to every one and then curse us out. He would call us names that would make the toughest guy in the world blush. He would get angry about nothing and because of the steroids he was strong. Because of the cancer he was starting to go crazy and because of the steroids he was becoming psychotic.

There were days were he would choke us, me the kids, any combination. Calling the cops on him would be quite counter productive. It was not him. He was very sick and dying. He did not need to be abused and sent to jail. One day he was so crazy and mad about nothing I was driving us home from who knows where and doing 50 down a main road. He reached over and turned my car off. He grabbed the key with such force it bent in half. Luckily I am a good driver. Luckily I know how to handle pressure and luckily we did not crash. He would get angry regularly and say he was moving out. He would literally pack everything he believed he owned(meaning well I paid for the tv, I bought that picture, I picked out those pillow) everything. He would say he was moving out and put everything in front of the house. When he was really really mad he would call his family, mother, sister and tell them that we don’t take care of him. That we don’t feed him and we hide his medicine. He would tell him that our oldest daughter was to busy screwing the guys in the neighborhood to help him get dressed and get to the bathroom. He said I was not taking him to his appointments. This of course was far from the truth. We stayed with him every minute day and night and when he ever got to a reasonable amount of steroids again he did realize it. That is the saving grace in the whole thing is that he did not leave this earth angry mean and violent.

This steroid induced rage lasted about 2-1/2 months. We had days that were truly nightmares. We had to listen to him every word he said or he would flip out. He would call family members and lie to them. Sometimes he would decide to fight with them to. They always blamed it on us. They believed we were being bad to him and all the crazy lies they believed. To this day I can’t stand them for sitting home living their lives while he literally went crazy abusing us and then they have the nerve to think we did something wrong. My mother in law to this day exactly one year past his death has not seen my children, asked how they. 90 percent of his family is out of our lives now. Sad, but good they are pretty worthless anyway.

My family did not know what we were going through. I never believed they would understand. I would lie and say he was not feeling well so no one would visit. I just did not want them to see the holes in the walls and the broken things from his fits of rage. I can look back on it and laugh as I have a gift of sense of humor. I am blessed with the ability to say it was not him. He loved me, he loved us this was the drugs talking. When we finally could not take him anymore I had to do something drastic. I felt that he was going to really harm us more than what we already were and I did not want to see it turn into a tragedy. I gave him Tylenol and told him it was his medicine. I knew that once the steriods started wearing down he would crash. He would fall asleep and feel like crap. The steroids were keeping him alive, they were also killing him. Finally he woke up feeling down and hurting and sad. He said I think I am dying now and I need to go to the hospital. I played the loving wife and comforted him. Once we got to the hospital they doped him up on the steroids again. They admitted him just because he did not feel well and the stage of his disease. The emergency did not understand that he was going crazy from the steroids. It took several days of him being in the hospital for it to start getting resolved. It took for nurses to hear him screaming at us on the phone when we were down stairs in dialysis with my youngest daughter. He would swear we were out doing something bad. He would be nice in front of the doctors and nurses but be mean to us. Finally after a doctor saw me crying in the hallway to listen to me. I explained what was going on and he knew right away that it was the steroid psychosis. He was not the doctor caring for him. The only way he was able to help was by putting him in a seizure room. This way he was being monitored by camera. This way they could see what was really happening when they were not in the room. They saw him throwing waffles at the kids. They saw him screaming at us and all kind of things. They would come in the room and he would pretend to be nice and that we were playing. He would want us to go along. Of course we did because we did not want more problems but we would tell the nurses when we would go into the hallway for whatever reason. Eventually they figured out they need to get him weaned down to the lowest possible dose. This would take many weeks and we would not see the benefit for several weeks. They have us some medicine that would knock him out if he went crazy at home and sent him home. Well he was crazy for about 3 weeks or so. We agreed to take him home only if he would agree in front of the doctors that if he went crazy at home he had to take it. Well too bad that did not happen he would throw the pills across the house and call a cab to take him somewhere. He would have no money and I would have to send the cab driver away. This was a very very low point in our lives. The kids and I were really starting to be afraid of him. We were tired. We were annoyed and we were scared we would never see him as himself again.

Finally he got to a reasonable dose. He was awake and functioning but not psychotic. This was better. He did not remember anything from that time. He did not remember painting, He kind of remember making the  holes in the walls. He did not remember the name calling and choking and punching and everything else. He did not remember cursing out his mother. This all came back on me eventually. When he started getting normal again. He would call them. They would say are they still treating you bad. That wife and daughter and all this nastiness. He would lie to me and say they did not say it but I would be sitting right next to him and hear the conversation. He felt terrible and spent many many nights apologizing for hurting us. It took the kids a while to get close with him again. They always loved him and that is what allowed us to look past the horribleness of it all.

As the time passed his health continued to fail. We did everything possible to fight it. I loved him with all my heart and while he was going through that terrible time, I kept it to myself. I did not share with anyone except one time his sister because he called and forced her to come get him. That was one of his big moving out days. I told her he was going crazy. She took it like really, but not serious.

He was admitted to the hospital several times during the next few months. Each time he came home a little weaker, a little more tired and a little nicer. He eventually got so nice that it was nicer than I ever knew him. This made it so much harder to lose him. I would try so hard to boost him up. Any little thing he did I would tell him he was great and full of will. He eventually lost his left side completely. He would still walk. He would use his right side to his full advantage until this no longer was possible. He did fight this horrible disease with as much fight as you could ask for. He kept positive. He would make this videos and looking back on them I cry my eyes out. He would sit at the table for hours drawing and it would usually be something saying that he loved me or one of the kids names or something that was easy for him. He really did amazing considering our first visit to oncology told us days to weeks to live. He managed to get past the horrible couple of months and make the next and last 7 a whole lot better. Even when he would lay in the bed for weeks on end and barely get up to eat or use the bathroom, he would yell out Babe- I love you. He would do roll call with the kids and tell them how much he loved them no less than 20 times a day. No one could know just how much he needed to say it and we needed to hear it. I still see his face all swollen, with his eyes shut and him yelling to my oldest daughter, he would yell hey G come here. She would be right next time him watching tv or reading and he would say you know I love you. We spent months sitting quietly while he rested. The kids, the dogs and I would just sit there. We did not know what to say or do. We would just talk to him when he was awake. The good thing is that with each down came an up for a while. He would have up days or nights where we would actually have fun. We would watch movies. We would make videos play cards and one night we even sat and had a few drinks(this is rare for us ever and I mean ever) We would take those good times and cherish them. My oldest daughter and I spend months researching this disease, If there was a way to cure him of it we would have found it for sure.

I would hope that no one ever has to experience this disease, or any like it. I know that cancer is a monster that just keeps on. I would hope if you had the time to read this and the misfortune of knowing someone that must take these high dosed steroids to see the signs before they experience what we experienced.

I hope my kids really can move past all the bad and just remember the good. I know that is not really possible as I know I can’t. But like I said before I am quick to make a joke to help ease the pain.

I will always and forever miss him. In 9 days it will be the one year anniversary of his death. I don’t really think this is the kind of anniversary we dreamed of. Hoping he is resting in peace….until we meet again.

Today’s plan- Yellow Rice and Empanadas

For the past two years my children and I don’t enjoy home made cooking like we used to. When my husband was still alive we thrived on sitting together as a family for dinner and other meals when possible. We did our best to cook regularly and for the most part the kids loved when he cooked. He made the best Chicken Wings ever and mostly everything he cooked came out very good.

When he got sick, some how or another he started only wanting Sandwiches and fast food. I did learn through reading a lot about brain cancer that is very typical. I figure it has a lot to do with loss of ability. It is hard to hold a fork and knife. It is embarrassing having to admit you can no longer do these things so you tend to over compensate. I don’t have a taste for any of my favorite foods I just want a Bacon Egg and Cheese on a Bagel several times a day. We ate a lot of junk as we were constantly in the hospital and times were difficult.

During that time I injured my knee. It got bad enough to need surgery. This put in even bigger damper into the cooking thing. Now he is gone just about a year and I just had surgery on my other knee two weeks ago. It has been a long hard battle for me and my kids and we work through it the best we can. Since going out is pretty hard when you are broke and can barely walk, we spend a lot of time home and sadly it is very hard to get back on track when you are in those situations, plus my kids diet’s are a pain in the butt. My oldest daughter does not eat any red meat or pork and she is very very selective about the poultry she eats. She is not too fond of veggies and she is difficult. The good thing is she is about to be 22 and for the most part she tends to her own meals (at least when her boyfriend is around) My son is almost 16 and he does not eat any meat or poultry or fish. Only fruits, veggies, carbs and snacks he is not vegan but that is because he is learning what fruits and veggies he really likes and what of the soy and tofu kind of things he likes. My youngest daughter is 11 and she is a dialysis patient. She has a strict renal diet and fluid restriction. I just want to lose this extra weight and be healthy so I will be around for a while if I can help it anyway.

So with all that being said Cooking is fun, but its stressful. What does everyone want that everyone will eat and that will not drive me crazy and make me stand for long periods of time. Well- that is usually the hard part.

Two out of three love Yellow Rice- 1 loves chicken empanadas, 1 loves beef empanadas and one loves them stuffed with onions and peppers and olives and cheese and little yellow rice. This is can be done all in one meal. It is time consuming but I can sit and stand while preparing and cooking as I have to make the two different meats and rice but then I can sit and cut everything up and put them together then I just have to heat the oil and fry.

I was blessed enough to have been taught to cook a little Spanish food from an old friend. Her first husband was Cuban and her second was Puerto Rican. She learned from the different mother in laws and she of course added and changed to make it her way which was delicious and I have also learned to change to make it perfect for our taste.  It did not hurt that my husband was Puerto Rican and Italian so he taught me a lot also. He could not and would not learn to cook rice though.

I will share a quick version of the recipe but should you have any questions and need more information about something please feel free to ask. My daughter said this should be a secret recipe like Dad’s sauce but I don’t agree. I feel if you have something that is great you should share it and let other people enjoy also. But hey to each their own right!

Yellow Rice

Rinse rice-  In rice pot add the following seasonings

2 tbsp Sofrito – I like the Goya Brand frozen(I also keep it defrosted in the fridge) with dry seasonings I use a about 1/2 tsp but you can adjust to your flavor

1 packet Sazon(with Achote(color)) and 2 sprinkles yellow coloring (badia sells for 1 dollar in the spices section) if you use too much will get like an orange color(it dry food coloring)- if you can’t get the yellow coloring in your grocery store you can use a couple of teaspoons of tomato sauce it will help color it but too much could change the flavor so you will have to adjust for that. I leave it out as this is a terrible meal for my daughter that is on dialysis too much sodium and too much potassium and way way too much salt(I actually leave most of this out for her and put a little hot sauce and she thinks it’s the same but please don’t tell her that)

garlic powder, adobo, black pepper, onion powder about 1 tbsp of olive juice(just from a regular jar of olives) also about 8-10 olives and a tsp of oil

Mix well and start heating on low( you can add other ingredients gondules, meats,etc) Add the rice and mix well in seasonings. Make sure all of the rice is evenly coating. Add water and boil when most of the water is boiled down add lid and lower temp until tender.

Empanadas-

I buy the shells pre-made. I like using the Goya brand also. They have a piece of plastic in between each shell and that helps them from sticking together while you are preparing them all to be fried.

I fry with vegetable or canola oil.

Cut up about 1/2 a green pepper, 1/2 onion and about 30 green olives.

Shred about 2 cups of cheddar cheese- I like the mild better

I use boneless skinless chicken for the chicken and very lean for the beef.

I chop the ground beef as small as possible and the chicken I cut into very small pieces.

I season them both the same only the chicken I leave out the ground cumin. For whatever reason it changes the flavor and not for the better.

Season the meats with a few tbsp’s of  Sofrito, the beef gets a whole packet of sazon and the chicken gets a half packet.  1/2 tsp each, garlic powder, onion powder, black pepper, ground cumin(beef only) season salt, garlic salt, olive juice and if you have it a few shakes of Mrs dash regular.

Drain all liquids and oils from meat and chicken.

Set up your preparing table with a couple of plates, and forks and spoons and bowls, mix together the peppers,onions and olives in one bowl, the cheese in another the meat on a flat surface (I like to use those plastic cutting boards) and lay out the shell add 1 tsp shredded cheese 1 tsp onion,pepper mix and 1-1/2 tsp’s meat or chicken. I work with one and then the other. Fold in half make sure all ingredients are in the middle and then press the sides down neatly and tightly with a fork on both sides so they look like the photo.

Heat oil and fry to a golden brown and serve with hot yellow rice and hot sauce is how we do it here!.

Enjoy and be careful frying.

PS my son gets the ones with only the veggies and cheese and a spoonful of rice. He likes it. There are so many ways this can be done. We have also made Breakfast Empanadas in the old days when everyone ate meat and eggs.

Another Gift from Beyond….

Yesterday was a pretty good day. I went to dialysis in the morning with my daughter. It was a fairly smooth treatment for her. She did not get sick at all or feel bad and she was giggling listening to videos with her headphones on for most of her treatment. I sat chatting with the older kids and the nurses and took care of a few phone calls I needed to make. My Dad had told me the other night on the phone that he needed to talk to me but it was not a conversation for the phone. I thought one of three things,see my Dad will be 80 this year. My Mother Passed away 15 years ago next month. The three things I thought was Oh My I hope he doesn’t tell me anything worse with his health, Possibly he wants to take my son shopping for school cloths.(this was a tradition of my Mom’s and Dad took over when she passed, All the Grand’s get new school cloths from her) or I was in trouble for spending something I was not supposed to and he knows about it. See I am not working due to several things, one my husband passed last August and he was the one who took our daughter to her treatments and appointments and I worked full time, Two I just had knee surgery two weeks ago and prior to that I could not walk for the last 7 months and three I can’t find anyone who is willing to hire me and work around my schedule and need to sit down at work. So that being said we are living on a budget that is smaller than our lives. For a while I had some money that was left to my from my Uncle and that was helping and then my Dad helps with everything else. It is a crappy situation for me and him. I wish I could figure a way out of it and I am hoping this surgery heals soon enough to help at least the standing part of the situation.

Well I was wrong all around. None of the three things I thought came to play at all. My Dad come over, It was a really bad thunderstorm and we sat and chatted while my kids acted like kids(they are way too old, 22,15,11) but they were having fun and really getting on Grandpa’s nerves. He can’t tolerate their immature conversations and the noise is also bothers him. Well after the big one went off with her boyfriend and the TV lost our interest we decided to go out to Lunch. Funny the kids were being annoying but he said on the phone OK we will get lunch, now it was 4 in the afternoon and they were starving and he was saying well guys, your big kids you can go in the kitchen and find something to eat. Well eventually he remembered and just He and I and the little one went out. It was a great lunch/dinner but the place was freezing cold. None the less when we pulled up back home I said Daddy are you coming in?(see he never told me why he wanted to see me in person) He reached into his pocket and said you know this is kind of late. See your Mother wanted you to have this, A beautiful gold bracelet, it is heavy gold and probably has some value. He had two of them they were slightly different. He said one was your mothers, and one your grandmothers, I no longer remember who’s was who’s but she wanted you to have it and she wanted your sister to have the other. I am guessing my other sister probably got something too but since she lives with him now he probably gave to her a long time ago. My Dad worries with my financial situation I will feel desperate to buy my kids something and pawn it. He knows me and knows that anything materialistic nice but I really don’t care about it one way or another. But what he does not know is I cherish every little thing they give me. I still keep an old broken ashtray from a incents thing he brought back from a trip years ago, I still have my Mom’s locket she gave me years ago, I still have all my kids first’s so many things and I am quite sentimental about these things. I have old curtains I will never hang nor will I ever get rid of just cause my Mom gave me them after she died. My sister makes fun of me how I word it but when she passed over the next three years my Dad slowly gave me little items that she picked up along the way, he would always say oh your Mother bought this a long time ago and here so I would tell my sister’s ha ha Mommy gave me another present. So not only did I get this awesome bracelet that will look very nice when I do ever get job interviews or have opportunity to go somewhere nice, I have another piece of my Mom or Grandma. Then the bigger top it off is My Uncle. My Uncle never had kids. He was my Dad’s younger brother and growing up he was the favorite relative. He was funny and always told jokes, he was cool if he caught you doing something bad he would yell at you and make a deal I wont tell your parents if this is the last time. He caught me with my first beer, first cigarette, and first joint. He never got mad just a little yell and lecture only one time I yelled at my mother and I had to hear it for a long time. Well this Uncle not only was a really cool guy he was very generous. He would rather give you his stuff if getting new, this has come from stereo hand me downs to cars to any thing you can imagine. Currently,half of my home is furnished in things he either gave me or left to me when he passed. He always split it between me and my sisters but they swore I got the better end because I was the youngest. Who know’s when he passed it was the worst. When my mother passed my uncle filled that void for my Dad, he was not in the best of health and gave my Dad lot’s of opportunity to hang out and go places together. He always loved having all of us over to swim and have bbqs he could no longer get out of his wheel chair the last few years but he was fun to play dominoes with and have a few drinks or just hang out and shoot the shit. He was a cool old guy. My whole family adored him. Well back to the story. My Uncle was fighting a law suit. I have no idea what it was for. When he got sicker and sicker and transferred everything to my Dad and had and attorney deal with all his stuff. My uncle was Smart and he made some investments which he left to my Dad and my Sisters and me. Well My Dad told me the lawsuit was lost a long time ago. I forgot all about it. Well it went back to court for and it was won There is some big settlement coming. My Dad said he did not want to hurt my feelings when my sisters get their cut and I don’t get mine. He said that he is going to keep it like a bank account and he will pay my bills and I can actually try to live off the little money I am getting. It sounds like he is treating me like a baby but he is not. My kids are used to me bringing home 800 bucks a week and money not really being an issue.Now we live on 700 bucks a month and its very hard on me as I am feeling like crap about having no money ever. So now I can worry less. When I want to buy a new mop or get my kids hair cut its not going to be begging my Dad, I will just tell him at the beginning of the month which bills and the amounts and if I need more I will tell him. This should keep me going while I figure out my other knee and heal and find work again. I wont be doing good and I wont be out shopping and spending money and having fun but I will be taken care of and that is beyond amazing. So yeah , I have a really cool Mom she might be dead and all but she is very much still giving me gifts, I will cherish that bracelet forever. I have a really cool Uncle too. I can close my eyes and picture my life with out everything he has taught me and given me and my life would be crap with out it. So yup even though my Uncle might be dead too he continues to give me gifts from the beyond also….

So with all the bullshit I have been dealt in life, I also have been dealt some really cool, amazing and generous people in my life and their words, thoughts and actions have molded me into me. For that I am extremely thankful.

Good and Bad memories all rolled into one. Whoa Roller Coaster!

Yesterday was a really really rainy day. Once we woke up in the morning it was pouring and it continued to do that through out the day. So My kids of course got up and did the Mom we are bored thing. I told them go play the Wii. Even though it is old and you got bored with the games it has been a long time so it will be fun again. They decided to take my advice. I realized that we actually never unpacked them when we moved last November. While looking for the game I came across two stacks of old cd’s and dvds. I can’t believe how many photo’s that I was sure were lost forever resurfaced. I sat for hours loading them on my computer. I spend so many hours laughing and crying and calling my kids back to my room to say look, look , Do you remember this or that. I found pictures of so many things. This was a great feeling, however old pictures bring up old memories.

It is coming on one year since my husband passed away. The year before he died it was really really hard. He had brain cancer and that disease not only destroys your body but it destroys your mind as well. I would not be surprised if me and my child truly have post traumatic stress disorder from it. His personality changed by the day and sometimes by the minute. I believe the year turning up to him being diagnosed was also rough. He would be really fun or really miserable. When his treatments started he was so humble. Probably the nicest we had seen him in two years for sure. Then came the steroids. No one warns you of the disaster this causes. He truly was violent and me and the kids were so scared all the time. Then in little two minute doses he would shine through and it was Dad. So we tried our best to understand it was out of his control. After a few times of him breaking all the walls in the house and half of everything in it he started on us. Mostly me but sometimes the kids too. He was actually abusive and strong. Thank god I recognized it was steroid psychosis and I brought him to the hospital. He was really manipulative. He would convince them that he just wasn’t feeling good and they would believe that he was not insane. I went to the bathroom(while he was in the ER) I was kind of just standing in the hallway in shock and some young resident Doctor said hey lady you are not OK Whats up. So I told him. I said watch him from a distance while I go in there see how he treats me and then watch how it turns the tables when you come in. He did . During this time he threw his wedding band down the hallway, He threw a bag of open cheese doodles all over the place, He called me all kind of curse names, he started talking about Angels and Devils and why did I stop being the voice of his Angel and get out of the body of his Angel(which was me somehow). Now someone other than me and my kids saw his craziness. He was admitted for the brain cancer but in a seizure room so they could really watch his mental status. They saw he was nuts and was playing the game with everyone. They saw how much we loved him and just took his abuse and tried to be nice and help him anyway. Eventually he was weaned down to the right amount of medicine and slowly but surely he returned to us. This took about 6-8 weeks this whole process of him being insane to him being somewhat him self again. He barely remembered any of it so we learned to laugh it off but really could anyone just laugh off being choked? watching your kids get screamed at. One time he starting flipping out on my son in McDonald’s he made him get on his knees and start saying Our Fathers(our kids are raised Jewish and have no clue what an,Our Father is other than maybe from TV) It was wow no words could describe what we went through.

Then after he passed a whole year almost and the shock of it all is still there. We have all learned to try to let it be gone and remember the good times. Sadly those bad times are there and they hurt. Most people don’t know about them. They see the major love we had, we had for him, he had for us. That was all true. I have never met someone in my life,like him. He was amazing at best and so much fun. He was intense and he grew up really rough. He had a rough ride with addiction and dysfunctional family. I was his rock and he was mine. So although yes part of our lives were tarnished by this disease the only thing I could do is share it with someone else. Maybe they know someone acting this way and they are on those medications for a real reason but too much is too much and they think well the Dr. said its the right amount. No don’t let it become Psychosis. Because I shared the signs and you know to get help sooner. I hope anyway.

So yeah my title is about memories because seeing all those pictures yesterday made me realize, I have had quite an adventure in life and I am only about to be 44. I am still young. I have endured a wonderful childhood. Really good parents. Half way decent sisters and three great(ish) kids. I have endured divorce( not very pretty either) and I have endured love, I have endured health crisis between my daughter and her dialysis and her other health conditions to my husbands brain cancer to my own health issues. I am still here. I am still laughing and joking with my kids. I am still fighting through this crazy mixed up world and I am happy to be doing it all. I am sad I no longer have my partner. He was really a daily adventure. Life is crazy like that. We do not get to decided who will stay in our lives and for how long. So yeah. Hold on to your pictures. Save those old Cd’s and save them on your computer or get them printed. Because life may in fact be a Roller Coaster rider but, don’t people ride them for fun, excitement, exhilaration. so ride away life and enjoy. Take the good with the bad, the sad with the happy and live and let live…..

Perspective means everything

Some days are easier than others. Sometimes you wake up for the day and an amazing good mood and nothing can draw you from that. Other days are like a nightmare from the first moment you wake. Of course there are the mixed up days that can be good and bad combinations. Today was one of those for me and its only 4:30 in the afternoon.

I know that I would really like to just moan and groan in this post and complain about the day I have had but I won’t. However I will tell you its been rough,

As I was driving to the store with my 15 year old son complaining about the world, and mostly complaining about my oldest daughter who is the light of my life and the extra prickly thrones to my roses. She is my combo life we go from very happy to very much want to punch each other out. She is 22 years old and knows very well how to push my buttons and knows exactly how to get me to cave to her every whim. This is not good for either of us.

While I was talking with my son, we got were we where going. The reason he rode with me this time was so he could wait in the car so I did not have to turn it off. My battery in my car died and when I got it jumped the guy told me that my battery should be fine just needs to recharge so leave the car running for 40-70 minutes either driving or running and it should be fine. I really did not like this idea but figured he knew more than me. So when I left him I am sure he was glad I went into the store. He does not like stress. Anything that stresses him out makes him very stressed so I usually don’t use him to let out my emotions. Today, sadly I was not able to control it. So while I was in the store I started thinking about my day and a tear rolled out of my eyes. Then it dawned on me. This is all a matter of perspective. I could look at it as a very annoying day. I could look at it as my daughter always taking advantage and causing me more hassle than needed. I could look at it as a pity party wow what else could go wrong or I could look at it as well hey if I did not have three kids I would not have grief of three kids. I believe their good is better than their bad. I could look at it as well my car broke down but it only broke down because I do own a car. I could be really upset that my knee is killing me and I did not have a cane or I could be thankful that my surgery is over and the pain I am feeling is part of the healing process and had I not done that I would have never been able to forget my cane.

So the funniest thing is that I went out to apply for a job, that will require me to stand,(with bad knees) will pay me minimum wage and I will probably struggle to work that job, so why do I apply well because I am determined to get better, determined to figure out a way to pay my own way, and determined to not let all the things that I swear stress me out not stress me out.

I recently went through a lot of life changing events. I am sure I will share bits and pieces along the way. Life is a roller coaster sometimes you are at the top of the hill coming down sometimes you are heading up and for a very short time once in a while you actually sit at the top and then again you also sit at the bottom. I may have been at my going down and bottom the last few years but a lot of positive self worth has come from it. I did not fall off the wagon and start drinking, I did not allow myself to get hooked on pain pills even though I do need them and my doctors agree I do need them. They give me 90 for 30 days I have 60 for 120 days. I take them sparingly knowing I am a mother, a single(widowed) mother and I need to show my children that no matter what, no matter how hard it seems, even when everything is against you, some how some way you need to find you way through it. Even if some days you yell and scream, and some days are rough you find a way to get through and hope that the next day is better or at least more tolerable.

It would be nice if I were able to find a way to put aside the bad days for a while and head into better days. It seems that is a dream and not reality but if you know me, you will know that aside from me moaning and groaning sometimes I really do try to think about perspective and remind myself that hey I struggle paying my bills( I have bills which means I have things so my kids are not with out) I struggle walking(I am still walking and not in a wheelchair) I have bad days (I am still alive)

So with that said I will say it one more time Perspective means everything.

Today I will look past the bad part of the day and look forward to a better evening and if for some reason life does not want me to have a better evening then hey there is always tomorrow.