Everyone needs a place to call home

Although a small group of people overall are actually homeless, many are without a place to call home.

Feeling homeless and being homeless can be the same or it can be quite different.

Everyone , every person, every being ,whether they admit it or not, needs to feel there is a place that is home, that is safe, that is peaceful.

For some this so called home in a garden, or a park or in their physical house. Some find it in a religious or spiritual place or worship. Some find it in a bar and some find it on a website.

Over the past year , I personally have been working with my sister, building a website a place to share and place to learn and a place to find comfort. This website  https://whitebearsworld.com  is still in progress but it main focus is for children and their families that have a rare or chronic disease, to share their stories and learn from one another. A place to share ups and downs and a place to offer new found information(medical)

Also in this past year I have spent a good part of the year in the hospital with my daughter, who has VACTERL Syndrome. Over their year I found it impossible to work and properly care for her, my son and myself. We would physically be homeless if not for the kindness of my family , we are staying at my Dads house while we figure out of next move.

Life is crazy and hectic sometimes and recently I have realized how important being home is.

Having that safe zone. Knowing people care if I am ok.

I wish that for everyone, although running into a very old friend whom was holding a sign looking for help getting food. He is not only emotionally homeless but physically homeless as well.

It broke my heart to see and I felt even worse that I have no way to help.

Please always send kind wishes to others as many many are physically or emotionally homeless.

Hoping as https://whitebearsworld.com, unfolds it will offer some comfort for others fighting rare and chronic disease to feel like they have someone, even a stranger who cares to know they are ok

Adding a few more worries!

This week is moving week. I have been packing for days and although I am almost done, there is still plenty of work to do.

I have not been looking forward to this move as I am putting my stuff in storage and staying with my Dad. After 25 years of living on my own, I am kind of sad that I have to pack it in a move home. I have been stressed about it, but have recently decided to look at it another way.

I have decided to see the good in it. I will be able to start saving some money, I will be able to not have to worry about lack of money and I will get to spend a ton of time with my Dad. I will get to live in a very nice area of town and I will be safe and loved. (of course so will my kids)

I always felt like I did not want to burden him. I know it will be an adjustment but in the long run it is short term and I jumping from one bad rental to another bad rental is just becoming silly at this point. I do have some concerns that my dog will be a nuisance to his dog as mine is much younger and a lot more energetic. Maybe it will all surprise me and they will become buddies, I hope at least.

I have not been able to work much the past few years, due to my daughter’s chronic illness and needs and my own medical needs. My knees are shot and my anxiety and depression were taking over full force. I have since started on a new medication and it is helping me to be more focused on what is important in my life. My family. My Health, their health and so on.

My daughter’s health has been a challenge to balance since the day she was born just about 13 years ago. She has Vater Syndrome(VACTERL Syndrome) Chronic Kidney disease and a whole bunch of other health concerns.

She is currently about 1-1/2 years post Kidney Transplant. She has had a lot of challenges in the past year or so but so far her Kidney seems pretty happy. She has some  virus issues that come and go and a constant battle with urine infections due to her lack of a bladder. At the end of next month we see Urology and they will make plans for surgical intervention to try to help with these constant infections. The procedure is called a Mitrofanoff and it is a long and complicated surgery at the time they will create a bladder for her and make a passageway using her appendix to allow for proper urination. It is big, she hates thinking or talking about it but it is truly starting to become an issue that is is not done already.

Yesterday was her monthly lab day. Although she was just discharged from the hospital last week and is just now finishing her round of antibiotics it seems something else is brewing. Her labs are off, her numbers are heading in the wrong direction and she is looking at another possible admission on Friday when she goes back to have a minor procedure(stent change) and repeat labs.

We are moving on Saturday so this could not come at a more complicated time, but hey that is what we do, complicated. I feel so sad thinking that the kidney could truly be acting up, but the doc said no panicking, it is not time to panic. It is time to watch for things and time to take care of the urological issues.

I would hate to think she could go through all this and potentially lose the kidney anyway. My poor little girl should simply be getting ready to celebrate her big 13th birthday. She should be ready to finish up school for year and enjoy staying at Grandpa’s where she can actually use the community pool as it is very clean and very well supervised.

Well I guess my worry hat is on this morning, but since she is in school , luckily she is not paying any attention to me. Hopefully today will be busy and distracting so we won’t be thinking about it much and hopefully I will close my eyes and my kitchen will pack itself. Yeah, I doubt that will happen but wishful thinking. As a Charmed fan, I wish I had that powers to move crap by just saying the name of the items like Paige does.. Yes I watch way too much TV!!

A wish for today…

 

My wish for today is that everyone take one second to be thankful to that Mom, Dad, Grandparent, Aunt , Uncle, Teacher, or whomever taught them to cope with things. To learn to accept life on life’s terms to be good to one another. In the end of life the only that will be said at a funeral (what your legacy is) is the kind of person you are. No one is saying wow they had an awesome stove and what a lovely yard they had. Do you know how many great jobs they had. What will be said was how you treated others , how you impacted others and the type of way of living you lived. So make your legacy one to proud of.

In my 25 years as an adult, I have learned so much. I used to think working all day and being able to buy things was the most important. Then I started having kids and I learned loving and caring for them and teaching them is most important. Then my youngest was born with VATER(VACTERL) Syndrome and I learned even more about life. I learned how to be a caregiver, and advocate for her health and so so much more. I have an honorary nursing degree as I fondly call it. I could go on and on about our experiences and sometimes I do but today I am just thankful to have learned the importance of simply being there. The importance of listening and the importance of hearing what you are listening to. The other day my daughter was having a rough time, she is noticing that all of her peers are so much taller than her. She is realizing that the medicines she must take make her face puffy and there is not much she could do about that and it is giving her some self doubt. I believe that is pretty typical type emotions for one turning the big 13 in 2 weeks.

She was telling me her concerns and I tried to respond with a joke. I thought perhaps it would lighten her mood and distract what was bothering her. Joking and laughing is one of my coping mechanisms. I would rather laugh than cry although sometimes inside I am crying while others see me laughing. It works not always but a good part of the time anyway. This time it did not work, she said Mom you are a clown always laughing but I don’t find this funny, I am feeling like and she explained herself. I immediately told her she can tell me anything and I will hear her out and try to find a way to make her feel better and if I can’t than well I can’t but at least she can get it off her chest. I let her rant for a good ten minutes and then I told her that somethings in life we have control over and others we do not. The things we can control we should and sadly sometimes we must accept the things we can’t and if there is a way to make those things a little better, we should at least try. This seemed to help on this particular conversation. I was proud of myself for knowing I had to turn off my coping mechanism and hear out hers. Had someone along the line not teach this to me maybe our lives would be even more of a mess than they already are. That night she hugged me tight before bed and said she is kind of glad she is small so she can still snuggle with me.

If that is my only legacy in life was that I loved and was loved, truly that will be sufficient!

 

And here’s to the future….

After almost 15 years I saw a Physiatrist, I used to see one a long time ago. At the time I suffered from not only depression and anxiety but self worthlessness. That was a long time ago. I have learned a lot about life and a lot about myself in these years. I no longer see myself as worthless, I actually think I am a pretty cool person. I am kind, well mannered(for the most part) and I can hold up my end of most conversations and when I can’t I stay quiet, crack a joke or admit I have no idea what you are all talking about so I am just going to sit back and listen.

I think all that that makes for a little clue as to how I might think, but it does not. It would be improbable to think that someone would be able to delve into my brain and get what is going on in there. It can be a scary place sometimes, mostly just mixed up, hyped up type thought but then there is some dark and depressing,sad and confusing stuff in there also.

Most people think I just go about my days but there are a handful of people who really know me. They know that I fight depression and anxiety and although I give it a good fight now and again it gets the best of me. In the past few years I have learned that no matter how I am feeling, put to the test, I will react and take care of whatever I need to do. If we have appointments, I get to them. If we have bills I figure out a way to pay them, if we have food I cook it, if we don’t I figure out how to get it and so on. So I do fight it, so what does that really mean, nothing on the big swing of things I still need help. I still have days where it is a complete blur and I have no clue how the things got accomplished and sometimes I wonder what exactly I said to all the people I encountered.

Well as it seems, the doctor did not admit me to an institution so that is a good sign. He also did not deny that I have had these issues a long time and even though I fight it on my own, I don’t need to , he is there and he will help to the best of his ability. I need to understand that just because you take a pill it does not lessen the fact that your kid needs to endure one more huge surgery before the summer is out and she really does not want to do it. It does not change the fact that I need to work, yet how can I work. I need to take care of business yet it is stressful not having a clue how. I need to understand just because a take a pill it is not magic it will not take away real life, however it will help, it will make me more evened out and less I can accomplish the world today and tomorrow and then I can’t get off the couch for three days. It may not make it perfect but it will help me to help myself. I believe that is a really good starting point.

I also learned that me talking to people about my issues and what is going on in my mind is a good thing and that seeing a counselor will help me work out some of the emotions I have and if anything give me a good sounding board. I need that.

I have so many stories I would like to share. So many things I would like to talk about , but then people would know, then people judge, then people would look at me and have something say about things that are past tense and even if you would have done differently, I am not supernatural and I can’t go back and change events, it is simply not an option. Although that would be kind of cool. I watch  a lot of Supernatural and Charmed and the different powers are all kind of awesome, but I know better….

So I will try out some new medication, hope it works, hope I don’t break out in hives like the others in the past, and hope to be able to see my future in the bright way I would truly like to see it…

Team Angel- Spinal Fusion

Thanks for the reminder Vater Syndrome!

These are the Before and After X-Rays of my daughter’s spine. Actually they are after and before as the pictures are posted.

Just last week we had her spinal fusion done. It was about a 4 hour procedure, although this is Angel we are talking about so you probably already know it was not really 4 hours. We got to the hospital ahead of time about 5:45 am and the day hospital opens at 6. By 6:20 they are looking for a good spot to put an IV. I explained to them she is a very hard stick. Even though they heard me they really were not listening to me. Not one of the 4 nurses could get a good vein. Don’t get me wrong the nurses found veins. They just did not work from all the scar tissue. The reason I tried telling them she is a hard stick. Eventually the Anesthesiologist Doctor came in and popped one right in an artery. I guess he can do that. At this point she was slightly overwhelmed but she is getting older now and learning to deal with the fact that she can’t stop all the doctors and nurses to come in when they need help. That is overwhelming for Angel she hates that. At home(TGH) they know that, at The Joes as Angel calls it they are learning.

So now the procedure is supposed to start at 7:30 and in fact they do take her back at that time. The nurse told me I will call you once the procedure actually starts and then each hour until it is completed. I was happy with that. I figured I would be less stressed getting the calls. I go back to the waiting area with me son and a gentleman from the hospital approaches me and asks if I would be willing to be part of their pilot program , updated text messages. I thought it was a great idea so I agreed. Now time is passing, My Dad shows up, now we are sitting waiting, my son, my Dad and myself. I am starting to worry why have they not called out yet? What is going on? Finally just after 10 am I get a call from the nurse explaining that the procedure is just now starting as they could not find a spot to put a central line, All of her access spots are shot and they struggled to find one.  It truly breaks my heart as I told them this from jump.

In any event she was comfortable and did not know anything going on as she was already sedated. Each hour or so they called out and each time assured me she was doing great. I also received a few text messages in between so I was super informed. I think the texting is great as it is not as scary as the phone some how or another.

When she first came out of surgery we were fortunate enough to know the recovery nurse. She has known Angel since she was a little baby and was quite familiar with her past health experiences. She recognized right away that her potassium was way too high for a Renal patient and immediately worked to get that reversed. By that evening her lab were almost back to normal. That was a good thing as any stress to Stevie(her transplanted kidney) is scary stuff.

The next two days were spent managing pain , only to wind up having a reaction to one of the IV pain meds so lots of steroids and benadryl and eventually figured out another pain plan. By the third day she was out of the ICU and on the second day of Physical Therapy. By day 5 we made discharge plans and have been continuing to heal at home. Aside from the obvious pain she is doing wonderful.

We are already noticing some differences, such as she is taller, her ribs are no longer sticking out in the front and back making her shirts fit wonky as she says. She said no longer feels the pressure in her lungs she was feeling from the ribs pushing and she is now practicing being straight which is quite different than it feels.

I knew this would be a big surgery, I was not surprised by the amount of blood she needed, or the issues getting the correct plan for pain. I was totally surprised by how quickly she was able to shift herself and put full weight on her legs.

Tomorrow she goes to get her stitches out and speak with the doctor about the amount of pain she is still currently having and the best way to manage it and hopefully get clearance to go back to teleclasses as the more you miss the harder it is to make up in school.

@TeamAngel

Kashmir…..

Shared from Youtube, if I need to state that to be on the up and up and all that.

So there are some days where no matter what your mind is a blur and you just need to escape it somehow.

Just got home from pre-op with my 12 year old. She is going in to have her scoliosis corrected. They will be putting in titanium rods and fusing a good part of her spine after they straighten out her ribcage.

I have known about this surgery for a very long time. It was scheduled for 6 months ago but she was not healthy enough to proceed at that time. She had her native kidney get infected and months of antibiotics that eventually led to surgery.

Anyhow after this day, I still had to meet up with her teacher and have a little school. See hospital homebound is a great program with little funding. If students miss days they lose funding, when a child misses on certain weeks it makes bigger impacts and this was one of those weeks. So we rushed to get in a little school and just now it’s 5 in the evening and I am quite thankful I threw dinner in the crockpot this morning.

I have several things I should be doing right now but quite frankly I am in my room, with my door shut and the music blasting as loud as my half broken sound system will go.

When my mind gets this stressy as I call it there are a few things I can do and one of the first ones is always blasting something that will bring me to a different time, a different place a mindset that was free and simple, no real responsibilities, no real people actually counting on me for anything.

The time and place right now in my mind is a much simple fun time, back of Lorenzo’s alley way on 249th and Union, hanging out sipping beers and blasting music, my first introduction to teenage life, my now I am old enough and cool enough to stand in a street alley, freezing my butt off killing myself with smoking and drinking and thinking there is nothing better than this. My life free and simple.

Blasting music from this time of my life is so easy for me, so familiar and yet so so far away. 25 years since I lived in NY 25 years since I really had friends, people to hang around with people who believed in me and trusted me. My childhood, teen neighborhood friends, school friends and all that.

In the years since, I have been married twice have 3 children and have surely had my ups and downs over these years .I would not trade them for anything as I love my children more than I could ever imagine an emotion even existed for, but today I just want to hide blast some Zeppelin or the Ramones and ignore the real life that exists on the other side of my door.

 

Enjoying the wonders of nature….

On a cold and rainy Sunday morning. Some of my family and I had the pleasure of being in Orlando Florida. We live in Tampa so it is not a very long trip for us, but with other obligations, appointments, schedules and finances travel is not something we can do very often and certainly not all of us together.

It was my Dad, my oldest Sister and her Son and Granddaughter, my youngest daughter and myself. The day before we actually went to Orlando and even my other sister was there but only for that day. It was a pretty mixed aged group of family , kids and adults. went from 81 right on down to 4. My Dad has his health issues, my sister back issues, me knee issues and my daugher bone disease among of health issues. The other two are basically healthy as far as I know, anyhow.

The cold weather made it slightly uncomfortable on Saturday, but on Sunday it was added rain. It lasted most of the morning and it really not the best day to have spent a fortune on tickets that were only good for that day.

The main reason for the trip was to take my daughter somewhere fun. Her last trip was her Make a Wish, when she was 3 and sadly, she remembers just about nothing of that time. My daughter has been through an awful lot this past year alone, never mind it has been her whole life all 12 years of it so far. One surgery after the next, one trade off for another. She recently spent 5 months in and out of the hospital with urine infection after infection, to finally her native kidney got terribly infected requiring months of antibiotics and finally a nephrectomy. This little lady has been a trooper through all that she had to endure and she continues to be that way on a daily basis. Since transplant she has had a lot of downs and she has major spinal surgery scheduled for 2 weeks from today. We all just wanted her to enjoy some of what life has to offer while she has a break from some of this stuff.

We wound up in Universal Studios, all ready to see Harry Potter world in its full glory. The parks ability to amaze me has not changed in the 10 years it’s been since I was there last. There were tons of new things to see to the point that we did not even see the old things.

We get to the park, decide which side has the attractions we want to see first and head straight to the Harry Potter world. The kids first stop was surely to get a magical wand.We decided to do a ride first and then head over. By the time we walked from the entrance to that area, we were soaking wet and cold. The kids did not care much but for me my knees were crying. My Dad was frozen and my sister was only good when she was walking, once she had to stand still the pain would overwhelm her, sit or keep moving works best. My daughter ignored her issues and went straight for the fun.

Now it is time to see where we will get this wand. We decide we are here we should do the whole Wand Experience. So we get to the line. It is not terribly long as the cold and rain deterred park goers. We had to wait about 10 minutes that felt like and hour for sure. As we wait in the line I am taking in the beauty of the park. The way they designed the buildings to look like the movies. The way they designed it to look cold. The way the snow was atop the buildings truly made me feel like I was meant to be in a cold place, that I was pretty cold. As the line starts approaching the entranceway to the door of the attraction, I am stopped next to a drain pipe. I look down and I see this little yellow flower all wilted and being ravished by the rain, coming through the pipe. It was so simple and beautiful to me. I thought of all the things I will see today I know some will be so big and amazing, but I am sure that my memory of the day will go back to the simple beauty of nature. The one little flower just there for the taking of the rain.

No matter where I go and what I do I try to take in a little bit of the world with me. I remember a time in my late 20’s maybe even my early 30’s I was hanging out with my Dad. Doing something to my home. I think we broke the spigot to the outside water hose and my Dad was fixing for us. So a very big beautiful bird flew in the yard. I said look it’s a Pterodactyl. My Dad stopped what he was doing and said, Really? do you not know what that is , I of course responded with a big bird, I don’t know. He stated you are uncultured. Why, I thought I did a better job teaching you about the world. I felt stupid, like I live in Florida and I should know that was a Crane of some sort. I don’t really remember. I just remember feeling dumb and wishing that I did not say there was a long ago extinct prehistoric bird in my yard.

Over the years I started paying more and more attention to nature surrounding me. I tried to learn the names of things and have made it a point to take photos of interesting things and in turn have better adult type conversations with my Dad, after my mother passed 17 years ago I realized that getting to know him a  person and not just a Dad was pretty important to me and having him like me as a person and not just his kid was equally as important.

When I saw that little yellow flower just hanging on , on the edge of that drainpipe, next to the awesome wand experience of Harry Potter I knew it was something I just needed to discuss….