It was rough last week…

Posted on by Jennifer GB

It’s Monday. It’s raining and cool out. The “I don’t wannas” are strong this morning. It was very difficult getting out of bed, perfect sleeping in conditions. This past week was rough, the weekend even more so.

Over Easter weekend I spent that Saturday in the ER because my oldest had a seizure three days after being weaned off the meds. I don’t know if it was from going off the meds as my brother in law suggested or if its something else. All the brain scans came back negative. They put him back on the meds for now. We’ll get a couple other tests done.

Wednesday, I spent the morning in the ER with my husband, who’d taken a fall in the rafters of a roof and ripped the skin back on his forearm on nails sticking out of one of the boards. He got six stitches with steri-strips. They’d have put more in but since he’s allergic to lidocaine or Novocain or any of those types of meds, they had to stitch him without any numbing agent. He said it only hurt a little bit. He never flinched so he is either good at hiding it or the fact that it didn’t really do any damage under the skin kept the nerve damage down.

Also on Wednesday, my friend Ernie, lost his battle with colon cancer, which he’d been battling since 2019. It hit me hard. He was a very good friend, a teacher and a surrogate father. I was warned he most likely wouldn’t make it through the night by my best friend who was also close to him, so my very understanding boss let me go early from work so I could get up there and say goodbye. He was heavily drugged for the pain with hydromorphone so he wasn’t very alert. I held his hand and talked to him and told him how much me and my family loved him, how he affected our lives and gave him a hug and kiss. He squeezed my hand a few times. I know he could hear but alertness and verbal response was not there. While talking to his wife about some topic i cant recall, he shook his head quickly no in disagreement to it, so I knew he could hear. His breathing was very labored because of the tumors in his lungs. It was so painful seeing him that way after knowing him for over 20 years as a boisterous, happy, laughing man. I left at 8pm when visiting hours were over and drove the hour home in tears. At 10:20pm, my best friend called to say he was gone. I cried and cried. I didn’t sleep the rest of the night. I called off work the next day because I was too emotional to deal with work, but also I looked like I went five rounds with Mike Tyson in a prize fight and lost. I cried most of the morning reading stories and seeing pictures on Facebook that people were sharing. I went back to work Friday. He was buried Saturday with full military honors. So many people came! Id bet there had to be at least a hundred people there and i know of at least a dozen that lived a distance away that couldnt make the trip for various reasons, that wanted to be there. People spoke good memories of him, some making us laugh and some cry. I was a pallbearer to carrying him out of the hearse and onto a stand for the “viewing”.

It was natural burial with no casket. He was a veteran and buried in his uniform, on a board and wrapped completely in what looked like muslin fabric with hemp handles for carrying him. He was laid to rest in the ground right into the dirt. No concrete vault like they do with a casket. I like that idea. I was thinking about being cremated but I think this sounds better…feeding the trees.

Afterwards we had a wake and there was so much food!!! So many stories told, so many laughs. I think he would have loved it and he was smiling down from above. I went home afterwards and sat on my sunporch listening to classical music, knitting and decompressing. A real whopper of a thunderstorm blew in and lasted for about an hour. It was awesome.

I will miss that man so much. I feel like there is a hole in me because he’s gone. It will take a long time to heal and it will leave a scar I’m sure. Rest in peace, Ernie, and if you wouldn’t mind, say hi to my Dad for me and that I love him.

Ernie Sanford-Martinez 11/14/46 – 4/12/23

Being Oblivious

Posted on by Jennifer GB

I try to walk through this world making as little waves as possible. I have always put others happiness before my own. So when someone I care about told me they hold resentments towards me, let me tell you it shook me to my core. I was rendered speechless. How do you deal with that? What did I do? How do I fix it? Can I even fix it? I’m sitting here wondering what I’d done to form resentment and I can only come up with my kids. I’ve been told I’m a helicopter mom. I put their needs before my own. I am too lenient with them. I don’t push them enough and maybe their right. One kid has survived cancer and let me tell you watching your child go through that when all I wanted to do was to be able to take that away from him so he wasn’t in pain, weak, sick, struggling…it changes you. It makes you paranoid over the second child and what could happen to him. Maybe I have let them get away with more than I should have and protecting them has always come first. I need to get past that I suppose. I know even I feel I’ve let my youngest get away with not growing up for lack of a better word. Maybe it will bite me in the ass when I am pushing him more, which I am doing. But, never, never did I think it would cause someone to resent me. How does one handle being told that?! I feel I am naive in all this. I feel like a bloody idiot.

It is now I realize I need to find a therapist to speak with. I can’t deal with everything on my own and that my mental health needs to come first. I feel like I have years worth of issues I need to deal with. Taking that first step is the hardest and scariest.

“A journey of a thousand miles begins with a single step” – Dao De Jing

Fuck Cancer

Posted on by Jennifer GB

After a real shit night of sleep, I get the news this morning that my friend and mentor that has been battling colon cancer that metastasized to his liver just found out they have four spots in their lungs…after a year of various treatments and surgeries. I. Am. Crushed. Trying very hard not to weep at work and grateful I have an office to hide in if I can’t keep the tears in check. My friend said she guesses they have maybe a year left. He’s been like a father figure for me and always there when I needed someone. He’s taught me a lot over the years and my heart is breaking he couldn’t get rid of it.

Im not sure if you’ve been here from the start but I began this blog when my oldest son was diagnosed with a rare kids cancer in 2016. After a year of a tough treatment regimen, he has been clear for five years and when he had his final scan in June, he was declared “cured” and now in survivorship status. He turns 21 in August.

So when I say any friend that has to deal with cancer just hits me hard. My friend is 75 and seems in good spirits I’m told but right now, I am not. I really just want to leave work and go home and drown myself in wine and chocolate. I plan on spending as much time as I possibly can with him over the next year and to the end. This is not the way I wanted to start my long weekend.

Alright. Time to at least LOOK like I’m working. Ciao.

How is it almost July already?!

Posted on by Jennifer GB

2021 has been crazy but not nearly as bad as 2020 was. So, to catch up my readers (all, like 5 of you, LOL) my entire family has been fully vaccinated. My boys went to school virtually the entire year because I sure as hell didn’t want to expose my oldest. who has thus far had clean scans from his cancer four years ago, to COVID. While I would say virtual learning wasn’t better than being in school, the two of them past with only one (my youngest) failing math that requires four weeks in summer school to make up. I’m not chastising him too much because, well, I sucked horrifically at math in high school so, I get it. My oldest graduated high school this year. (OMFG WHERE HAS THE TIME GONE!!??) A week before graduation, they lifted the two tickets per student limit for graduation and opened it to anyone and everyone and made it one big NORMAL graduation ceremony with kids sitting next to one another and no “6 feet apart” (of course masks if you hadn’t been vaccinated). I cried. A lot. My sister and Mom…cried..a lot. He is so happy and proud and went around showing everyone his class ring. Have you ever seen that commercial of the mother watching her son grow up and stating through each scene “if he xxx, it’ll be a miracle” and at the end of it he’s graduating high school and she says, with a tear in her eye “its a miracle”.. Yea. I said that. I live streamed his graduation for those that couldn’t be there and you can probably hear me say that on it, LOL! Five years ago when he was diagnosed with cancer I was fearful I would not see this day. I’m not overly religious but I thank God everyday that he has come through that and I thank all those that prayed through their various religions for him to beat this. It was so touching and heartwarming friends and strangers were praying for him. I’m getting choked up about it now again remembering. One more year and he will be considered cured and be placed in survivorship status and just monitor for side effects of the treatments. And if you are the praying type, I’ll take any prayers you wish to offer on his behalf to make sure he has no return of cancer or side effects. (I thank you in advance)

Work is work. Working remote three days a week, but that goes to two days starting next week and unless something changes, back to in the office fully in August, which I am not happy about. I like working remote. Anyway, still an assistant to a visually impaired woman (who I adore) but apparently my memory issues from a previous car accident make it difficult to remember all the nuances of information I have to remember to enter into the computers when entering plans for her. Bad review last quarter with the threat of letting me go if I cant get the knack of it. That, was a lot of stress for me. I kept it together during the day and when I got home I broke down to hubby who told me not to sweat it. If it comes to that, we’d be just fine. This is why I love this man…one of the many reasons anyway. If it comes to that, I am going to take this as a sign that office work is not my niche. I’ll figure something out. Its not great pay anyway, which you’d think with a state job it would be better. Maybe I’ll take the plunge and do my art fulltime. We shall see. Why can’t I just win the lottery?? This would solve a large portion of my problems. LOL!

We have done a lot of work on our yard. Hubby has gotten the terracing bug and working with stone creating walls and putting levels in our yard and a pond (not quite done yet). We have a larger garden this year. The smaller garden that we started with last year has peas, radishes, lettuce, carrots (which failed but for three, can’t figure out why either) and some stray tomatoes that came up from seeds that had fallen last year. The larger garden has about 8 tomato plants, corn, beans, a couple different kinds of peppers, basil and cilantro. We did ornamental gardening too. Planted a Bartlett pear tree, fig tree, 5 strawberry plants, Japanese kousa dogwood, vanilla/strawberry hydrangea, a couple more lilacs, four rose bushes, a blue rhododendron, another regular hydrangea and a climbing hydrangea near our one fence. I also scattered moon flower seeds around my yard to see how they come up, which probably won’t be till next year but here’s hoping they take in those dingy corners of the yard that have a lot of rock.

Health…gained weight. COVID was not kind and I, like everyone else, baked ALL THE BREAD! Worried about my current state of health I had all that special fasting bloodwork done and while one thing was slightly elevated (thank goodness that was all!), they just stated to make lifestyle changes and get more exercise. So…I’m doing just that. I’ve started doing more, watching what i eat, logging all that goes into my mouth and counting calories. I’m also working out in smaller time bits instead of one chunk of time. I am finding I’m doing more exercise that way and its less boring to do it in ten to fifteen minutes segments than 45 mins to an hour in one shot. I hate exercising. Boring as fuck to me so breaking it up and doing different things helps me still get movement in. One of the things I do is every time I go down to the basement to do a load of laundry, I jump on the bike for ten minutes. Usually gets me about two miles in that time.

Family life is great. Hubby and I couldn’t be happier. Still haven’t gotten our honeymoon yet (five years married this past May) but eventually we’ll save up the money to do it. I’d really like to revisit Italy especially since I just heard they are opening the tunnels under it for the first time for the public to view.

Still knitting socks. Cross stitching things too as that seems to have become a re-budding interest. SCA events are starting back up after over a year hiatus of them being canceled due to COVID. I went to a friend’s elevation for Chivalry a few weeks ago and it was glorious to be in garb again and hug friends I hadn’t seen in ages. The best comment a friend made as he approached me for a hug was “this is going to be awkward” because he planned on hugging long. I laughed, but not awkward at all and it made me so happy. Of course, about 2/3s of my garb was tight due to weight gain but there was a lot of laughter because EVERYONE was saying the same thing “this was the only thing that fit me”. No one cared. Everyone was laughing. Everyone was smiling. Everyone was happy. I missed that so much. I look forward to the normalcy again, which I know is still a ways off. But, its a start.

Alright..back to work. Ciao!

Shitastic week

Posted on by Jennifer GB

A while ago I had given up Diet Coke. I had gone over a year without having any. Then something stressful happened Im sure (because i can’t rightly remember right now) and I started drinking it again. Two days ago i decided to give it up again. Today marks day 2 without drinking Diet Coke. While I wasn’t drinking it like I use to, I’m sure it will still be hard to resist. I’m not a water drinker. Never have been. If its really cold on a hot day or I’d just finished working out, then i can drink it. Otherwise, i don’t like it. I use Mio to tolerate it. So I am now working up to drinking the minimum 64 ounces a day with a hopes to hit the 1 gallon mark down the road. I’d bought that one container that was a gallon but it is a bit unwieldy and a pain to carry around and to work. I mean, the damn thing comes with a shoulder strap! Also, the ice melts too fast in it so it doesn’t stay cold. I think I jumped the gun and overestimated myself when i saw that on a friends page and bought it. It’s currently sitting on my dishwasher looking forlorn and abandoned.

My cousin died this week. She found out in July she had stage 4 pancreatic cancer. Sadly I didn’t find out till about two or so weeks ago when my sister told me. She went so fast. She was so young. She left behind her husband and three children, two of which are on the spectrum. I really didn’t get to see her outside of family gatherings because of the distance between our homes, but when we did, it was always full of laughs, smiles and love. I hate that she’s gone. I hate that I wont see her at future parties. I hate that she was taken so young. She was only 40. Why do the good ones die young?! It took about an hour after my sister told me she’d passed for it to sink in and then I started crying. I will miss you, cuz.

Being an emotional eater, I did cave to it some but not nearly what I would normally. I mean, I have never been one of those type of people that say they sit in their car outside of the grocery store and eat an entire cheesecake. I mean yea I’m a big woman but never, ever could i do that. Id barf if i ate more than two pieces. I could have maybe three cookies and a glass of milk and that is so filling i wouldn’t eat for hours. One of the reasons I always wondered why I’d gotten so heavy. I don’t really snack. i log my food into the “Lose it” app on my phone and i rarely go over my allotted calories I’d set in order to lose the weight in the time I’d set. I avoid bread, pasta, rice and sugar as much as possible. I try to get 8k to 10k steps in every day but with the desk job now its a bit harder. Weight loss is so frustrating. Why can’t I have a fast metabolism and eat whatever I want like a lot of my friends?! LOL!

Yesterday they called and told me my car was totaled. I’d heard this from the auto body shop the day before, and that sent me into another whirl of stress and emotion. They told me my Honda CRV 2010 was only work about $5400. When i looked up the payoff amount, it was at $6300. So I owed more than it was worth. All types of mental self beating ensued. “I was an idiot to pay so much for the car four years ago!” “Why didn’t i get gap insurance!” “I was naïve when i bought the car and the asshole salesman pulled a fast one on me and I didn’t know!” Yea..I ran down that mental path crying and punching myself. Then the angel at my insurance company called and informed me that my vehicle was actually worth closer to $9000 and I would actually get money back to put towards a new vehicle. Let me tell you I nearly got onto my desk at work and danced at that news. When I told them what the collision center said it was worth, she said they didn’t know their ass from a hole in the ground when it comes to car value. So, now I only have my rental for 7 more days and I have to car shop. Guess what I’ll be doing this weekend? I went this morning and cleaned out the last couple things from the old car and got my license plates. Good-bye Safira. You were a good little car.

Stress is a horrible thing. I can handle a little bit and not go over the edge. But between the death of my cousin, the car, mentally going from I will owe money for the now dead car to i don’t owe money and I’ll be getting money back is a horrific roller coaster ride. My boys visit their father this weekend. I think there will be a bit of wine drinking after the car shopping. Cause I’m sure THAT won’t be stressful at all!!

What a Long Strange Year It’s Been…

Posted on by Jennifer GB
I am a jumble of emotions today. I am so happy for Kyle as it’s his last day of radiation and so sad I cant be there so see him ring the bell of completion. Tonight, i get to hold him in my arms again and have him home and in a couple more weeks…permanently. I have also never been more grateful for the speed at which a year can fly by. Also, I will never take another day for granted. I am making a list of things to do when he is completely done with all this: Travel, day trips, new experiences, etc. I will enjoy every second I have on this earth with my family from now on as much as I can. I’m sorry it took this type of situation to be such a wake up call, but I have heard it and will make the most of the rest of my days here.
I am also so thankful for the people in my life. My friends, my family and even the strangers that have heard of what we’ve been going through and have offered prayers or sent written support. There are so many to list that have been supportive, kind, generous and loving.
Thank you Doug for being a great father and taking such wonderful care of him. Thank you Kerry, Sherri, Jessica, Elizabeth, Cherie, Christin, TammyLynn, Beckey, Susan, Susan, Sue, Sarah, Maria, Maria(and so many more I haven’t listed) for being there when I was a sobbing mess and needed to be held up or bitch-slapped virtually (guess who that was) and told to stay positive and that he would beat this.
Thank you Mary for talking to me that day and giving me that hope I needed to grasp onto. That assurance I needed to hear. That has kept me grounded this whole time.
Thank you Leo for being so understanding in all this and the loving son and little brother. You always have a hug for me when I was sad and always had a way to make me smile. Thank you for being so encouraging to your brother and helping him when he needed it.
Thank you Sandra for coming up and helping with hospital stays and phone calls. Thank you Roger and Colleen for all you have done too. I love you all.
Thank you to my Ryan for being my best friend and loving husband and always holding me when i collapsed and broke down through all this, all the while reassuring me he would be fine and he was strong and would get through this. Giving me strength when I needed it so desperately. Making me laugh and smile when i felt like i couldn’t. I love you dearly!
Most of all, Thank you Kyle. You have been so strong through all this and so brave. Somehow you always seemed to have a smile even when you felt like utter crap. I will make this all up to you, all that you missed this past year, I promise. Thank you for being so strong and wonderful..even you told me “i’m fine..Ill be fine!” when i was sad and scared.
It’s not all done yet but we only have a few weeks till it’s all done. Thank you God, thank you so much.

Pursuit of Happiness..

Posted on by Jennifer GB

Happy. A word I have not used very often in the last several months.  I have been stressed, worried, sleep deprived, lonely and isolated at times and also spread very thin like so much butter on toast. My life became working, doing what I had to in order to keep the household going and my self care became secondary. I said “fuck it” to my diet and medication towards it and I know I have gained some of the weight I lost back in comfort eating (OM NOM NOM KRUSTY BREAD AND BROWNIES). I have not knit in weeks having finished my last project and buckled down to finish a committed embroidery project for the kingdom (SCA, FYI) which I did enjoy and looked great in my opinion. Most everything I did was what I HAD to do. Obligations I needed to fulfill. Happiness was fleeting and yes, I had brief moments of it, like when my son went a day or so without stomach illness from his chemo or that he ate solid food voluntarily, asking for it.  When my youngest would do his chores the first time I asked instead of repeated requests to take out the trash, pick up his Nerf darts before the dog ate them, do his laundry, etc.

These last two weeks, other than keeping a committed watch on my oldest to see if he spiked a fever, I can honestly say I have been happy.  It has come to my realization that my happiness is hinging on the wellness of my oldest of late. I worry about him so much with these treatments and how to keep him up both in weight and health. I’m constantly scrubbing his bathroom down. Diligent about his regimen of medications and shots and constantly trying to get him to eat food. I’m a bear about people using hand sanitizer that come to the house and making sure they are well before they come to begin with. If he is doing well, it allows my brain (as well as the rest of me) to relax and enjoy my surroundings.  This last week has been the best I felt in a while emotionally. Physically a little run down, as I managed to catch a sinus cold that lasted a day or two but has caused poor sleep patterns the whole week.

Last night, the neighbor called to let me know that today was the towns Apple Festival and its also the day that people do their last yard sale. This got me very excited! I love my town!   You’re probably asking…why?! Alright..side story. Everyone has seen E.T., right? Who hasn’t, right?! Remember the scene with all the kids walking around on Halloween? Glowing jack o lanterns everywhere, hundreds of kids walking around in glorious and creative costumes? That wonderful small town community you always read about? That’s what I have where I live. I love it here. The only thing I mildly dislike is the fact that we have to get our mail from a post office instead of having it delivered. Want to know why? The people of the community voted it to be that way so they could all socialize at the post office. And they do! Every one waves to you when you’re driving around or walking.  They stop to have a conversation..even in their car in the middle of the street. Its small but it has a lot. Dental office, fitness studio, gas station convenience mart combo, chiropractor, acupuncture, tiny pharmacy, bank, dance studio, barber, Dollar General, adorable library, a tiny town hall with some of the most friendliest people you’ve met. There is a great park a block away from my house. There is the fire house where they hold the cute carnival every year and the streets half shut down for it.  A Boy Scout troop at the local church. Local town sports association for the younger kids. The typical pizzeria, Chinese food, cutely named deli and a diner up the street. All within two miles of where I live. Down the road a few more miles is the just most wonderful little market called the Apple Bin that makes the best apple cider donuts and chocolate chip scones I’ve ever eaten. The store itself looks like something from Little House on the Prairie. Minus the spiders ALL THE PLACES, its my little bit of heaven and we found a wonderful house on a dead end street surrounded by trees in the middle of it. We even have great neighbors!

So, my youngest and his friend took a shift selling apple crisp at the festival for their Boy Scout Troop.  My husband and I, both lovers of a good yard sale, put the leash on Rolo, grabbed a couple bags (cause we actually are courteous and pick up the poo when he goes) and went out for a walk on the town to peruse the sales. Lots out there, but we settled on a replacement curling iron for myself (identical to the one I had but damn near new!!), and under the desk exercise bike for office jobs and a nice fur coat that I can rip apart for the viking garb. Its a lovely blond color and its rabbit fur. Hey, for five bucks, you cant go wrong with that. We ran into friends several times on our walk.   Rolo got to finally  meet a few dogs but he was a bit afraid around them even though they were all very friendly to him.  ALL the people stopped to pet him, say how cute he was, gush all over him and one couple even asked for the breeders name so they could contact her.  When we got back home, I ran a load of laundry and hung it on the line. We sat on the sun porch with cold drinks enjoying the glorious weather we were having. 70 degrees, low humidity and a nice breeze.  It was just a beautiful day and as I was sitting here waiting for LFR to pop in WoW, I realized I was happy and not just that but I had been happy for pretty much most of this past week.  Last night I started a pair of socks to put on the etsy store.  It feels good to be knitting again. I am doing that and working on an embroidery project.  I feel good. I feel happy. Im still a little tired, but it doesn’t damper the happiness I am feeling right now.

Kyle is at the halfway point in his treatments. Being over the proverbial hump and going down towards the second half feels good. The “road map” as they call it has a little over half a dozen more inpatient stays and that makes me feel good that the number is dwindling down.  We still have not made any plans till this is done in regards to weekend activities or vacations or the like. Just taking things day by day, week by week.  Make a Wish foundation came by to visit with him and ask what he wanted. We are unsure if they will grant it or not but, he asked for “a pool and a deck like at Aunt Colleen’s old house”.  They really couldn’t get anything else out of him that he wanted. Let’s face it, he’s a kid that knows what he wants.  We shall see if that is feasible to grant it. Its not like they can do anything with it now anyway being nearing the end of September.

The air has a crisp chill and fresh smell to it. Its suppose to be pretty chilly tonight. We have the windows open and even though my allergies are acting up from it, I love it. Perhaps we’ll light the fire-pit tonight and cook smores.  Right now, life feels pretty good. I hope this feeling lasts for a while. I know this whole thing has ups and downs but i am hoping for more ups than downs here on out.

Oh, and friends? There are so many of you that asked what you can do for us. The best thing you can do is keep in touch. Reach out to us..me. Call. IM. Email. Communication is what we need. Knowing you are still out there. Sometimes it feels like when the diagnosis was spoken, many said “let me know how I can help” and faded back from us. I need your company even if its just virtual.  With having to put our life on hold to give him all that he needs, it feels very isolating and a little lonely.  I miss my friends. I miss the SCA. I miss taking pictures. I miss wearing garb! I miss pageantry! The banners flying in the wind! The clash of weapons in the lists! The smell of glorious foods cooking and wafting from the kitchens. I miss life and the socializing.  Please, Stay in touch.

I am in pursuit of happiness everyday now. Im trying to find it in even the smallest things in each day.  I will not let this beat me and it certainly wont beat him. He is my ARMS warrior and he will beat this. I love my boy!

Faith in humanity, restored!

Posted on by Jennifer GB

In a world where everyone keeps their heads down and minds their own business, the kindness of strangers still leaves me in awe and can make me cry with such happiness and gratitude, it makes me feel better and have hope for this world we live in.

We were out of milk and a few other things. Made a stop to Shoprite to pick things up for home (OMG how could I have spent that much for so few groceries!?!) and as i was loading my sacks of groceries into the trunk, another car pulled up two spaces away. I walked around front of the car with my empty cart and offered it to the two ladies saying it rolled well. “Rolls well, huh? Sure we’ll take it!” they said laughing.  The one woman then complimented me on my hair coloring and asked where I’d gotten it done and what was the inspiration for it?  I told her about Kyle and what he was going through and how he’d chosen a blue wig to wear and that if he wanted me to do the same I’d shave my head and wear a wig too, but he declined it and said he just wanted me to dye my hair and thus is the reason for my colorful do.

The two ladies looked at me with their hands over their mouths. One of them comes to me and gives me a hug and says “We never come to Shoprite. We usually shop other places but decided to come here today and now we know why. We were meant to come here and meet you. We will say prayers for your son and put him on our prayer chain.”  I was so moved by the kindness of these women, I called my husband and told him on the way home about what happened and it made me cry. (as it is again as I am typing this)  Thank you ladies for restoring my faith in humanity. Bless you both!

 

Exhaustion, Depression and Stress..OH MY!

Posted on by Jennifer GB

I opened Facebook this morning and saw a stunning picture of friends in front of glorious scenery on their vacation abroad and while I was so happy for them that they saw such wondrous views and had these fabulous experiences and OH MY GLOB that waterfall was just breathtaking….I burst into tears.  Not really the reaction I was expecting to come from myself. Quite shocking actually. Admittedly, I was envious of them. I adore them completely, I have no ill feelings in even the slightest towards them and their various trips they take I live vicariously through their pictures grinning from ear to ear and vowing I will go there someday, but I am envious.  I am finding a lot of late, that i am envious of what everyone is doing, the lives their living. They are living…..LIVING!! I feel like I am barely surviving each day and each day it is a struggle to do that.

The old saying that goes something along the lines of three steps forward, two steps back (or however it goes) I think is going to be my new mantra. When I feel like I get a handle on things, something trips me up or shoves me back a bit. This morning started with challenges (like waking at 3 am and not getting back to sleep) and try as I might to not let it set my mood for the day, it did.  It started with something as small as my son not brushing his teeth…for several days because he never unpacked his overnight bag from a sleep over. I mean..come on!! Yea, I know..he’s 12 and I should know better. I guess I underestimate my kids in hoping they will do basic hygiene every day without me having to remind them to do it. *smacks forehead* How silly of me!  Lesson learned: 12 year old boys don’t care nor think about these things. (Note to self: Start taping reminder notes to their mirrors and computer screens) I became very angry over this situation. Probably more so than I should have. I yelled. He cringed. The puppy cowered. I stormed out to go to work feeling like worse Mom in the world.

Now, today was to be the first therapy appointments for he and I. Being majorly stressed at all that has happened and is happening in our lives of late, I was very much looking forward to it. I should have known that it wouldn’t be that easy, it never seems to be in my life.  Mind you, i worked for a couple weeks with a case worker through my insurance company to find the right therapist that would fit for both my son and I. They took my insurance as well.  This morning at 8:30, the therapy office called to tell me my son’s insurance was canceled at the end of January and they couldn’t find me in the system. I felt my heart skip and start to beat faster and I think my eye even started to twitch a little.  After a call to the insurance company to verify we were still there and active, which we were, I called the office back. It was then they said they did find us, but, as it turns out, they don’t take the plan type that we have with said insurance company. However, they could set up a private pay price so that I could keep the appointment.  At this point I can now feel my pulse in my neck and temples and the angry tears started brimming in my eyes and I believe the next words I said were “Are you fucking kidding me!?” came out of my mouth and the lady uttered an oh my seemingly shocked to her foundations that I had the audacity to swear. Can someone please tell me why these offices can not check out the insurance eligibility prior to the few hours before the appointment?!  I promptly told her to cancel the appointments as I would not be keeping them since they didn’t take our policy and I certainly don’t have the funds to pay for their “private pay” fee.   Weeks communicating with a case worker named Johanna at our insurance company via email and phone calls and she couldn’t even tell that this place didn’t take my plan type?! Isn’t that this case worker’s job? To confirm these little details before saying Go ahead and make an appointment?  I called the insurance company back yet again and well, she couldn’t answer my call right now and would get back to me.  Right after that, the hospital calls to say I have to come back down (after I just left there yesterday afternoon from being there this whole weekend) so that they can train me on how to run a pump for an NG tube for feedings.  I was there..for four days, and not once could they have shown me this while I was there and they were doing them? After being told earlier that a visiting nurse would come teach me at my home, I am now told I HAVE to come back down and do a 3 hour drive because they do not trust outside visiting nurses. There is now a red haze on the edges of my vision.

I feel utterly beaten down, deflated and broken. Thankfully I am at work alone right now because I sat at my desk here and bawled in complete frustration and anger for quite some time. When that happens, the mind wanders through the strangest things and you reflect on a hundred things that have nothing to do with the insurance company but only further you’re growing depression over the situation and what life has thrown at you. My brain decided to reflect on my missed vacations due to health reasons with my husband last year..then this year with my oldest son’s..not to mention caused us to post pone our wedding and cancel a honeymoon all together. It reminds me of how poorly I feel i am handling my life right now which consists of work, trying to maintain the house and the rotating hospital stays for treatment or pop up fevers and try to raise another child who is also dealing with the stresses of a sibling with a major illness and acting out accordingly. Oh yea..and a puppy who seems to be have an endless amount of poop and always has accidents no matter how many times we take him outside to do his business. He reminds me of one of those play-doh extrusion toys!   In one end and out the other almost immediately! My brain decided to remind me of just how much life I was missing and all the fun I was not having. All the life we are not living.  I feel like the most selfish person in the world right now. I feel like I should be able to push all this aside and be that good strong person and focus entirely on his treatment and be that positive, uplifting supermom i should be. I am not. I feel like a failure on top of the extreme selfishness.

I know..this isn’t forever. I have had multiple people state that to me to try to help me to see the light at the end of the tunnel. FYI: It doesn’t help.  I know that when he is cured and back to his old self this will be something to reflect on as a struggle we got through and move in with our life.  But that time is not here yet. There are still months ahead of us in going through his treatment to reach that end goal. Hard, tough, stressful, painful months. We are barely half way in all this and I pray I can make it all the way through mentally and hell..even physically. I am trying to take it one day at a time so as not to feel overwhelmed, which is a monstrous feet in of itself. I have a feeling I will end up on some type of anxiety/stress medication and almost definitely something for blood pressure before the end of all this. I am fried.

I did warn you at the creation of this blog it wasn’t going to be all rainbows and unicorns and sunflowers, right? Right?!

 

 

 

 

 

Frustrations & Complaints (move along if you don’t want to read further)

Posted on by Jennifer GB

The night didn’t go so well. The lack of sleep has caused me to be in a foul disposition thus is going to reflect in this post.  The IV machine kept beeping and of course the nurses didn’t hear it so it would wake me up and I would have to go out and let them know that there was an issue with his fluids. This happened at least three times.  Then he had to use the restroom so he needs a hand with that..mainly rolling the IV cart and maneuvering it for him since he is half asleep.  All that started at like 12:30. I started to drift back off and then some weird ass dream woke me up and had my heart pounding. I can’t even recall what it was now. Then, the hunger set in. It was damn near overpowering too. I kept craving sushi in the worse possible way. I seriously debated going down to the cafe that is open 24 hours but all the food is starting to taste the same there and from what the nurses said, they aren’t that well stocked in the wee hours of the morning. So, after a cursory search of the floor to see if there were snacks of any type other than saltines or graham crackers, I went back to bed. The hunger pangs kept me up though and I decided to surf Facebook. Why oh why do all the amazing and scrumptious looking recipe videos come up at that time, when I am soooo hungry?!  It was torture, I tell you. I finally fell back asleep sometime around three is my guess.  But, the damn beeping IV machine woke me at 5:45.

On the complaint front, while the nurses are wonderful as well as the other staff here, the facilities leave quite a bit to be desired. First, they have these vinyl pull out couches and they have to be only slightly more comfortable to sleep on than the floor. Let me tell you, osteoarthritis and this couch do not get along what so ever.  I usually take Advil PM in order to get a good nights sleep, but last night I forgot to. Just as well I suppose considering Kyle needed help.

The bathrooms. We have been in here probably at least ten times now, and in as many different rooms.  Every room (save one) is equipped with these filters over all the faucets including the shower heads.  Our guess is they are the equivalent of Brita filters so the water is clean for patients with compromised immune systems to bath or wash hands without worry of bacteria. Here’s the problem. These filters, they clog up within two showers and then the water flow is a trickle coming out. And that is if there is a descent water pressure, which a lot of times there isn’t.  Nor hot water, or a semblance there of. The current room has a puddle in the base of the tub that has rust in it. Apparently there is also a problem with how they are leveled so they dont drain properly.

This is a children’s hospital. Children of this day and age have electronic devices that rely on internet such as tablets, cell phones, laptops and gaming systems. I have seen them all in various rooms (one teen had the whole X-Box One with Connect set up).  The problem is, when the internet infrastructure was installed, they underestimated the demand on it so it is very laggy. They also linked all the nurses mobile computer stations to be wireless as well so add that to the demand of mobile devices of the patients and families and calling it mediocre would be a kindness.  A simple video chat with loved ones is just about out of the question let alone playing a game or streaming a movie or show.  Thankfully, Kyle has a bag of dvd’s he brings with him and is happy with that.

I see the hospital updating the grounds right outside our window. There use to be a mini golf course and they have chain-link fenced off the are and are dubbing it Phase 2 of the gardens.  The nurse and I both said, wouldn’t the funds have been put to better use for updating the bathrooms/plumbing/computer issues (just to name a few)?  I know i would have budgeted the money for those things other than a new garden.

One thing I do find amusing is there is a ghost in the room. The automatic feed paper towel dispenser just randomly feeds out paper towels without anyone being near it to wave a hand in front of it.  *insert twilight-zone music here*

On an up note (I did say last night I would try) Kyle is in good spirits. My mother is coming to visit with belated presents for him which he is entirely too excited about.  He is smiling a lot and eating cheese its like they are going out of style. Milk and Dr Pepper too.  He has made a request for mini powdered donuts as well.

I feel a nap coming on. I think Ill go give in before company arrives. If you’ve stayed this long dear readers, thanks for listening to my vent. It did help some. I will just be glad when these hospital stays are in our past and he is cured and recovered to his old self again.

Ciao