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Posts Tagged ‘family’

My Big Fat Life – First day of school crap. Literally. 

In Uncategorized on August 29, 2017 at 4:00 pm

Today was the first day of school for the kids. I’d been dreading waking up early again, but excited at the thought of hanging out in a quiet zone where I wasn’t telling people to stop fighting, and being able to hoard cookies for myself while lazing around to nurse whatever it is that still has me consuming Kleenex like it’s nose candy. I planned to live this out while watching an episode of a show I’ve recently fell in love with without interruption. By the way if you haven’t seen Girlfriends Guide to Divorce yet, watch it. 

In my excitement to get in the house and carry out my perfect plan to be as sedentary as possible while being blanketed in only cookie crumbs and void of being immediately greeted by conflict and complaint,  I locked my keys in the car. 

I called my insurance company for roadside service who in turn sent a guy named Mike out about an hour later. Mike came and unlocked the car door so my keys could no longer mock me from the front seat where they sat, so yay Mike! 

I opened the door willing to take whatever time I had left and make the most of it, only  be greeted by a howling dog and a pile of his crap. I guess he’s trying to step in and make sure the legacy continues. Asshole. 

(Mike) 

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My Big Fat Life – Jesus Take The Wheel (but let me press the gas pedal)

In Uncategorized on October 14, 2014 at 9:43 pm

Gabriel had another seizure the weekend before last. It was one of those grand mal seizures, and scared the crap out of me. This makes three now.

The second seizure he had was something called a “partial”, and it was after that the Dr ordered an EEG. The day before he had this last one he had the EEG done at the hospital he was transferred to, so the ER Dr. was able to speak to the neurologist, who spoke to someone who then spoke to the neurologist, when then spoke to he ER Dr., who then spoke to me. Yeah, I know.. confusing, isn’t it?

The initial impression they have from the EEG is the same one the neurologist spoke to me about when we met her for the first time, last week. Gabriel has Benign Rolandic Epilepsy. He may outgrow it, but the onset of it has come a bit later than usual, so it all really remains to be seen. He will stay on medications for 2 years, and they will do another EEG to see what that looks like. If it’s clear, then he will go off the medication.

From what I have read, the children don’t typically need medication, but because he has had so many in such a short amount of time, they put him on it.

So now we have answers.. more answers. It’s been a bit overwhelming at times, and I have gone back to spending time with tears. I have learned to be a heart parent this past year, and now I need to learn how to see a grand mal seizure without freaking out, but all in all I remain greatly blessed. I do wish that my Gabriel could just have a time where life wasn’t throwing something new out at him, and he could focus more on the things teens worry about instead of worrying about having something happen.

Anyways, I kinda feel like I am telling God to take the wheel, but keeping my foot on the gas pedal trying to control the speed of things where I want them to be. I know I can only do what I can, but it sure would be nice to feel I have some control in this situation where I feel helpless at times.

 

 

 

My Big Fat Life – What Are You Staring At?

In Uncategorized on June 2, 2014 at 8:20 pm

I used to get really offended when kids would stare at Gabriel when we are out in public. You see, because of the prednisone doses, Gabriel has been dealing with a suppressed immune system. Because of this, when we go out I make him wear medical masks to reduce his chances of walking into a cloud of droplets when kids (or adults) cough and sneeze, and fail to cover it up. This isn’t a hard concept to learn, yet I see people fail to do this all of the time.

Lately I have come to the conclusion that kids are just going to gawk at my child no matter what, and it’s not a reflection of crappy parenting, kids are just naturally curious and lack the politically correct barriers we enforce on everyone else around us. What I haven’t come to accept yet, are the adults that not only gawk, but I have seen whisper and then giggle while looking at my son. This isn’t even a politically incorrect response, it’s just a social douche move. I can handle the kids gawking, but the adults who lack any social grace just annoy the heck out of me. I’ve started just looking right at them, and informing them that my son isn’t contagious, I am protecting him from people. Yes, maybe a snarky response, since I am also giving them the “people like you” look when I say it, but really.. what the heck?

As if my son doesn’t already feel weird about the weight gain from the prednisone, he now has to deal with wearing a mask which further singles him out, just so he can have some sense of normalcy in his life, by getting to go out and do things. Add the fact that kids and adults (who should know better) stare, and it’s not exactly the most amazing experience to go out in public anymore.

I thought I would share a thought that may help with the social experience if you ever find yourself in the space that you are staring in curiosity, that would not only remove any idea that you may be one of those people who lack any social swag, but would also make the person on the receiving end of your stare, maybe a bit more happy. It’s really easy.

Smile.

Yes, just smile. No, not one of those douche snark ew-what’s-wrong-with-you smiles, but just a nice kind smile. If you find yourself staring at the guy in the wheelchair, or he kid with a medical mask on, and they see you.. smile. Make it look like a moment you are offering a moment human connection, and just smile. I would much rather you smile at my child than give him on of those expressionless stares, and whispering giggles. Okay, so you are probably stating and wondering what is going on, or maybe you are thinking to yourself some expression of sadness for whatever it is that ails a person to be in that position to begin with. Whatever it is that is going through your mind, just please find a way to offer up a genuine and kind smile. A kind, generous and often welcome response to whatever it is you are thinking can make all the difference to the person of your curiosity.

As for your children, it’s okay. Maybe not to other moms, I can’t speak for them, but I can speak for myself. Just perhaps if you notice your child staring, use that moment to teach your child to smile in response to making eye contact with other people. When you get to your car, share with them that sometimes people look different and that is okay, and a smile is an appropriate and polite way to quietly greet others. Can you imagine the way we could change the way we interact with others by simply teaching our children, and ourselves, to smile at other people?

That would be a wonderful thing.

Last night Gabriel had some pain, and it bothered him up most of the night. It was in his shoulder, which is one of the symptoms that we typically deal with when fluid starts to build up around his heart. Thankfully it is now 8 in the evening and it never progressed, so I am relax a bit with the hopes it was just a random ache or pain.

Since today is Monday, that means another taper of the prednisone and it being the 2nd of the month, it means this is the start of his very last taper. I always find myself riding the wave of anxiety when the time draws closer for him to go off of the security of the prednisone, but this time we have that little purple pill on board (colchicine), and so I am trying to let the cautious hope ease the crop in that wave, just a bit. I’m not really doing such a great job of it, but after months of having been in this place before, I am learning some coping skills. One is that I am shutting down emotionally from those around me, but I am not shutting people out. In the past, I just went into emotional survival mode and shut everyone out, with all of my energy focused on trying to ride the wave without falling off and belly flopping into my metaphoric ocean of anxiety. Now, I am still in that place, but I am learning to ask for a hand from those I trust will help catch me. I’m still not 100% with this skill, but I am getting better.

I still don’t have a lot to give out to those around me during this stage of the process, and I am learning to be okay with that. I used to put a lot of expectation on myself to meet the expectations of those around me, even in my stress, but that would just weigh even heavier on me, and honestly I can’t do it. I am learning to identify the difference of the expectations of others put on me, those I put on myself, and the reality of what I should take on at any given moment. That might sound like a big lesson, but really I am just living it one moment at a time.

Now if we could just live human connection, one smile at a time…….

(Gabriel at the grocery store. As my daughter, Sarah, recently acknowledged on a recent shopping trip.. no, I don’t mess around with the cereal)

Gabriel Shopping

 

 

My Big Fat Life – Tomorrow Is When?

In Uncategorized on May 15, 2014 at 9:08 pm

A couple of days ago, Gabriel saw the Rheumatologist. As you know, he has been tapering the prednisone every Monday while taking the colchicine.

The plan is to continue the taper, with him going off the prednisone completely by June 11th. He will stay on the colchicine after he finishes the prednisone, with hopes that it will prevent another flare up of the Postpericardiotonomy, and there will be no fluid around his heart. He will stay on the colchicine with no definite ending date, until we see how it works. Typically he gets sick within 3 weeks of ending the prednisone, but we are hopeful the colchicine will prevent that from happening.

June 11th.

June 11th.

This day is set in my mind, and as it approaches I am cautiously hopeful yet preparing my spirit for what might lie ahead.

It’s hard to believe that it’s almost been a year since the heart defect was found. No one tells you how quickly time pushes past when you have a child who is chronically ill. I was thinking back to September when the Cardiologist suggested the surgery to remove the sac of the heart. He (the cardiologist) said to me “But that is way, way out there. We have medications to try first, and that is about a year out”. Yet here we are almost year later from his initial diagnosis, and it doesn’t feel like a year has passed by.

Maybe it is because I don’t even think in terms of making future plans anymore. Every thing is about the here, and now. Maybe that is why times seems to pass so quickly. When you make plans for events that are scheduled ahead, time seems to move so slowly. Now it is all about just making it through the day, and hopefully to the next one, without any events taking place that might indicate the medication isn’t working. In a way it’s been a good change, because I am learning to live in the moment. I’ve always been someone who spends a day scheduling and planning the next day. Sometimes I get so busy scheduling the next day, that I at the end of the day I realize I have spent my entire day preparing for the next. Now, I am learning to live right now. I can’t always do the things I want to do, I am not a rich woman in any sense of the means, but I am learning to appreciate the now. Don’t get me wrong, now that I am working with the kids with online school and the entire burden of daily responsibilities fall on me, I am staying busy no matter what. Just I am learning to embrace the moments where I can. If that is stopping and giving myself 60 seconds to pull my hair back and apply a dab of blush, then I do it. Buying tickets for a concert I really want to see that is months out? Not happening. Katy Perry is coming in September, and trust me, I wanted to go so bad. But not knowing where things are going to be in September, I couldn’t justify spending the money when times are already tough, and not knowing if I would have been able to go or not. But oh man, I would have loved to get a floor ticket and had one night I could just let go.

But here and now, things are okay. Gabriel is handling the taper well (even though that has never been the issue)and he is fine in this moment, and that is what it is all about. Wouldn’t trade that for all the Katy Perry tickets in the world.


 

My Big Fat Life – It Came In On a Dark Horse Comic

In Uncategorized on May 7, 2014 at 4:27 pm

Gabriel, he started a new taper to his prednisone yesterday (the Dr. had him do it a day late, since we typically do it on a Monday) and he is holding on this dose until he sees the Dr. again on the 12th. Other than some random pains that haven’t amounted to anything, he seems to be tolerating the taper pretty well, though the taper has never been the problem. It’s when he goes off the prednisone completely, that we seem to run into trouble.

This first week of May was pretty busy. On the 1rst, Dark Horse Comics made a special allowance, and invited Gabriel into their offices for a private tour. He and his brothers got to sit at the conference table, where some pretty cool things happen in the world of graphic novels and comic books. They were given a demonstration on how the art comes to life, and given some of the coolest goodie bags afterwards. Right before they left the conference room though, Aub (PR guy) let Gabriel keep a copy of the graphic R.I.P.D. which was displayed on the wall of the conference room. Since this is one of Gabriel’s favorite movies, he was pretty stoked. I hadn’t heard him let out a victory whoop like that, in months. Aub was pretty much my personal hero that day.

I don’t typically post things I have written prior to posting, because everything I post is something I am writing I the moment. However, I wanted to share something I wrote on April 30th, knowing that May is going to be the month we most likely find out if the Colchicine works. As the time draws closer, I panic a little more and try to find the good in all I can, in the moment.

April 30th 2014
It’s 2:38am. I’m exhausted, and quite possibly too tired to sleep. I’m sitting on my kitchen table, with the patio door open, and listening to the wind gently blow against the leaves like a perfectly written symphony. Boys and dog sleeping, the faint lights of planes as they fly over, and me. Just me. It was just me and a spoonful of whipped cream, but that’s done, and now it’s just me and a naked spoon. If I believed time could give hugs, this is what I imagine it would feel like. If I believed time could kick ass, April is what I imgine it would it bruise like. But if time truly does heal, then the future is what I hope it looks like. #Peace #Hope #BuyMoreWhippedCreamLaterToday

One week down.

(Gabriel sitting at the conference table at Dark Horse Comics 5/1/2014)

Dark Horse

 

 

 

 

 

My Big Fat Life – Gabriel & Day One

In Uncategorized on April 17, 2014 at 11:13 am

Gabriel took his first colchicine pill this morning. It’s a little purple pill. It’s weird to think how much hinges on that little thing producing huge results. It reminds me of something Gabriel shouted out once, while trying to wrestle with his older (and much bigger) brother, Ben. Keep in mind this was before I knew he had a heart defect. I probably would have offered him a coloring book on the history of non aggressive play, with some soft and non threatening crayolas, had I known before they tried to do all of that play wrestling that brothers do. But I remember it so clearly when Gabriel was standing up and trying to get Ben into a mock head lock. Both boys were laughing so hard, and through the laughter Gabriel shouted out ” I may be small, but I am much bigger than my size!”. Those words were so big to say, as Gabriel has always been much smaller than his older brother despite how close in age they are.  I am hoping that is the case with this  little purple pill as well. I am hoping it is much bigger than its size, because it has a heck of job ahead. I am pretty sure Ben let Gabriel win that day, and I hope that little pill helps Gabriel win again.

When the Rheumatologist first told me about the colchicine, he told me that he had used it in only two other children with pericarditis, and without good results. He went on the state that he had just recently read an article in the New England Journal of Medicine, that says colchicine had showed promising results from preventing/reducing recurrence when used with Prednisone. What they are doing, is keeping Gabriel on the prednisone, and starting colchicine at the same time. He will taper off the prednisone over the course of weeks, until he is on colchicine only. Then we wait. Typically Gabriel starts to get sick within 2 1/2 weeks after stopping prednisone. If he can maintain on the colchicine, then that little pill is doing great big things. If not, then.. well, surgery.

When the Rheumatologist told me about the drug, he gave me a choice between that or methotrexate. The pros of colchicine are that it works much quicker, and Gabriel really needs to start getting better sooner than later. I was concerned that he hadn’t seen promising results though, and I needed more answers. Someone forwarded the report to me, and I was able to find some more after I Googled the study. I had questions about the study, so I emailed one of the investigating physicians in Italy, and asked a heap of questions. I was really worried he might not email me back, but within the day, he answered.

We exchanged emails back and forth for a few days, and he was able to answer my concerns. I started asking as many questions to cover all the basis I could. I wanted to know how many were teenagers, how many had underlying health issues, and so on. Things I felt I needed to know to help me make the most educated choice for Gabriel and might give him the best chance at feeling better, and avoiding surgery. The investigating physician stated that colchicine is worthy of adding to his prednisone treatment, so this seemed to be looking like this might be the medication worthy of a try. Even though the Rheumatologist hadn’t had promising results in the past, we all know Gabriel doesn’t seem to respond typically to a lot of things, so maybe he is the one patient that will turn this around. That is my hope, anyways.

So here is to little, but big things, today.

 

(Gabriel and I, 4-2014. I have no clue why he is squinting. When I asked him why he was, he couldn’t remember either)

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My Big Fat LIfe -The Perks of Being Me

In Uncategorized on April 15, 2014 at 3:41 pm

I’ve been waiting for doctors to talk to each other, and decide what the game plan is, since last week. I have called every day, and at times I have even spoke to the doctors themselves, who promise me they will speak to each other, and then the next time we talk.. nothing.

Today I spoke to one of the cardiologists and made it clear that I am waiting for them to hurry up and get it together, so we can get Gabriel where he needs to be. I am giving it just a couple of more days, and then I am just showing up at their office and waiting to see someone. This is ridiculous.

In the meantime, I just feel the need to write today. It’s been a pretty busy few days, and throw in the fact that my phone landed in a puddle of water today, I think I am ready for a hug and some coffee. The upside today, is that Dark Horse Comics sent a package of graphic novels to the house, as a gift, and is giving us a private tour of the campus in a few weeks. I really appreciate the extension of kindness.

I was looking over my blog last night, and read the entries from 2012. I measured where I am now, compared to where I was then, and I feel like I have changed a lot as a person. Some of it holds pretty true, though 2012 seems to be the year that I had a lot of awakenings.

I also realized it’s now been three years since I started this blog. The anniversary of it all just escaped me. Life has just moved on that much. That is really exciting to me, considering there was a time I was scared I would never be able to feel whole again. I will admit there have been times I have considered tearing down this blog. I look back at the entries of 2011, and I am just so embarrassed that I was that sad over a relationship that was really nothing more than a disaster. But then I get an email from someone else who is in that place, where I was in 2011, and I remember how much it meant to me to know all those things I felt, and how isolating they were. I don’t want others to feel alone, and I hope they read past those entries and see that life does move on. I guess I just don’t want people to read it, and judge me on who I used to be. I want people to get to know me for who I have grown into. Especially when dating is in the picture. People have the advantage of reading my life, and that is really exposing.

So I thank those who have been reading my journey these past three years. I especially wanted to thank those who sent me texts, emails, and support when I recently revealed that I am interested in dating men, in my blog “I Learned”. I was terrified to write out that truth, but I knew I needed to.

In closing this, I wanted to share a quote from a movie I have playing in the background while writing this. “We accept the love we think we deserve.” – The Perks of Being A Wallflower. Take that for what it means to you. To me, it means staying true to those things I wrote in Jan. 2013. I hope whatever it means to you, it means that you find good things from, and for, yourself.

 

 

 

 

My Big Fat Life – Gabriel and His MRI Results

In Uncategorized on April 8, 2014 at 5:30 pm

I got the call tonight. I will spare you the round about details and lack of planning (or even that the cardiologist yawned during the conversation), and get right to the point.

The pericardium sac is thick and stuck to places on Gabriels heart. What does this mean? Well, as it was explained to me, the sac gets thick and starts to adhere to the heart, much like a spider web. That is not supposed to happen, and this is what is happening to Gabriel. I am calling his regular Cardiologist tomorrow to set up a game plan, and speak to the Rheumatologist to discuss medications. There is one, Colchicine, that might help. If it doesn’t, and the sac gets even thicker and adheres more to the heart, then they will have to operate and remove the sac from his heart.

The cardiologist that I spoke to tonight, is the one who did the MRI and I’m not a huge fan. Up until recently, he has questioned every time I have taken Gabriel in, as to whether or not Gabriel is even having problems. I am hoping the MRI has now convinced him that Gabriel is indeed not well, and now we need to get super proactive to figure out what to do from this point.

So… here were a few of my questions for him tonight, followed by his answers:

Will the medication unstick the portion of the heart that is already adhered? He doesn’t think so.
Will it adhere more? Possibly.
Can the sac completely adhere to the heart and constrict it? Yes.
What will they be doing to monitor his progress? Just wait to see if the medication helps and prevent another relapse.
Will they know if it’s adhering to the heart more, based on symptoms? No.
So then why won’t you be doing a test to keep a check on things? (No definite answer given).
Why did his ANA levels test positive? (This can indicate Lupus) Not sure, it can mean a lot of different disorders so we need to talk to the Rheumatologist.
Have you talked to the Rheumatologist? No.

Can anyone else see my frustration? Tomorrow, I will be speaking to his Cardiologist and hopefully get a game plan going. I also plan on making some calls to other children’s hospitals to see if they have any experience in this condition. I’ve got to make sure I am not leaving any stones unturned, in trying to find answers to help my son.

On a better note, I feel much more grounded today after having a mental day yesterday. I am taking everything one step at a time, and choosing to address the things I can do something about, and let go of the shit I can’t. I am in a much better frame of mine today, to do just that. You would think with this news, I would be in a much worse place than I was yesterday, but I can’t help but feel that at least we have answers, even if we don’t know why it’s happening to him. At least we know what the result is, and can address it sooner than later. That perspective makes me feel better, and that is what I am trying to hold to.

(Gabriel while waiting for his MRI yesterday)

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My Big Fat Life – Gabriels Heart

In Uncategorized on March 29, 2014 at 7:51 pm

The Cardiologist spoke with me the day before yesterday, and after speaking with the surgeon, they  have finally decided to do a CT Scan or an MRI on Gabriel, to take a closer look at things and make sure they aren’t missing anything. I am both happy they are finally doing this, and terrified they might find something that will require another surgery. They are supposed to call me Monday to schedule this, so I will be sure to write an update soon.

In considering that they might have to do another surgery, I go into an instant mode of fear. I am really struggling with the fear of having to watch my son go through that whole process again. It just makes me so sad for him. I am trying really hard not to borrow that worry, but I have to prepare myself for the possibility that this could happen.

 

My Big Fat Life – Mariah Carey Just Verbally Hugged Me

In Uncategorized on March 4, 2014 at 9:01 pm

This is my third attempt to write an entry. Each time I sit down to say something I just stop cold. I don’t know why it feels so vulnerable to write tonight, but it does.

Gabriel saw the cardiologist recently, and he says the repair is perfect. I guess it takes 6 months to be able to tell for certain, and Gabriel has passed that benchmark.

Today was his last dose of the prednisone. I am so happy yet so scared. I am happy that he has tolerated this long round, and has seemed to come off the taper well. The true test will be over the next few weeks. I am praying this goes without incident, and perhaps we are finally heading in the right direction.

I am holding to that hope with one hand, and completely terrified to let go of the security of this medication at the same time, with the other. It’s kept him healthy and I like having my son smile again. It’s so nice to see him full of life. It does my spirit such wonderful things. Yet tonight, right now in this very moment, I want to be held. I would love to be gently consoled that things are going to be okay. I’ve been fighting back the tears all day, because as much as I have been hoping for this day, I have been dreading it at the same time. It’s like letting go of the edge of the boat after being tossed from it, to see if  you can swim after all.

Maybe that is why I feel so vulnerable in writing tonight. I feel so naked at this moment. I feel stripped of certainty, and I need clothed with reassurance. But here I am on a Tuesday night, the boys in bed, and I am trying to find a way to pull it from within myself to just keep going on when I would rather throw myself on the couch, cover my head with a blanket, and demand that the world stop for just a moment until I get my reserve. If only blankets could hug, I think I would probably not emerge from my bed until the sun broke the morning.

So weird as I write this, the song Hero by Mariah Carey just came through my speakers. I’d like to think the timing of the song has meaning. I do not by any means think I am a hero of any sort, but the lyrics are a bit of a verbal hug and heaven knows I will take what I can tonight.