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Archive for April, 2014|Monthly archive page

My Big Fat Life – The Goodbye Girl

In Uncategorized on April 24, 2014 at 9:55 pm

Lately I have been really thinking about life. A few blogs back, I talked about the things I have learned since Gabriel has gotten ill. It’s not been easy to come to terms with a lot things that I didn’t think about, allow myself to think about or even want to think about.

One of those things is love.

Lately the boys have been talking about wanting me to date, which I find completely ridiculous considering my whole life is just about the children, doctors and school. It almost feels selfish to even think about wanting something for myself right now… ever. I have a hard enough time spending money on myself for new shoes, let alone spend time with someone else.

Truth be told, I hide behind my responsibilities a lot. I wrote a blog titled Demi Moore and Orange Leisure Suits (which you can find here —> https://lesbianspaghetti.wordpress.com/2012/03/08/my-big-fat-lesbian-life-3/  ) In that blog I write “The fear of exposing my heart and it being rejected is a paralyzing thought..” and that statement is as true today, as the day I wrote it. Since writing that blog, I have faced the truth that I hide behind my responsibilities as an excuse to not think about the things I want, and what it takes to get there. It’s something I have been really struggling with. It’s kind of like, I have this space that I have kept the curtains closed to, refusing the sun it’s just and rightful task to shine through the window pane and into my room.

I have come to terms that I have spent a lot of my life being told Good Bye, when I have wanted a life full of Hello. In part I think I have put myself in those spaces, because I knew it wouldn’t amount to much at the end of the day. It’s almost as if I sought out the emotionally wounded and unavailable, because I knew it would go nowhere. It was a safe dysfunction. In fact, this whole blog was birthed from one of those very relationships.

The few times I have opened my heart, I was really wounded. The failure of those relationships almost served as confirmation that it was impossible to truly be happy or make another person happy, even though I knew it wasn’t right. Yet I allowed it to serve as reminder/excuse to shut the curtains a bit tighter when I might see a bit of sun coming through.

I am so tired of living that truth.

You might be asking where all of this is coming from. Well, recently when the boys told me they want me to start dating, I thought it was a really weird thing for them to say. The conversation took place while I was driving, and all 4 boys decided to give me their two cents on my life. They all agreed that they want to see me happy, and in love. I’ve been carrying that thought around, and then tonight I happened upon a song to a movie that I have always loved; The Goodbye Girl. If there is ever a song you listen to and think “That could have been written about me!”; This is that song for me;Only I don’t get the guy in the end.

I’m so ready for a different song to be sung. Well, I’d like to be the Goodbye Girl that finds someone who would sing these words to her, so to speak. I only hope whoever it is, is as careful with my heart as I will be with theirs.

(link to the song)

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My Big Fat Life – Isaac Bear

In Uncategorized on April 19, 2014 at 10:29 pm

I wanted to take a moment and explain the red bear that often appears in the photos of Gabriel. The bear is Isaac Bear.

As many already know, Gabriel had an identical twin bother, Isaac. When I was 20 weeks pregnant, it was discovered through ultrasound that I had twins. During that ultrasound, they also told me that Isaac was not alive, though they were essentially connected by one umbilical cord and Gabriel’s heart worked for both of them. I carried Isaac to term with Gabriel, since they were in their own sacs. After birth, Gabriel was in the NICU but was released after 10 days later, with a clean bill of health, according to the doctors. Of course, we would find out that wasn’t the case, after all.

A couple of years ago, Gabriel was really having a hard time sleeping. I took him to the doctor and after recommendations, I tried melatonin and a sleeping aide. Nothing seemed to work. He really struggled to fall asleep, and stay asleep. One day I was looking for some things, and came across Isaacs box. The box holds photos, and things from his funeral, that I have kept. Dried flowers, the program, and things like that. I had brought the box out and shared it with Gabriel for the first time. When we went through the box, he came across the red bear. I had bought the bear originally, as a Christmas ornament to hang on the tree, in a way to keep Isaac with us. Gabriel asked if he could have the bear, and of course I said yes. I kid you not, that night Gabriel slept through the night, as Isaac Bear sat on his bed. Ever since, Gabriel has never struggled with insomnia, the way he struggled with it prior. Now Isaac Bear follows when comfort is needed. Gabriel has told me that in a way it helps him feel like his twin is close by, and that somehow gives him a sense of comfort. I am very thankful for that bear, and the connection to Isaac that it brings for Gabriel. Anything that gives Gabriel a sense of comfort, especially now, rocks my world. I love that bear.

I will share more about Isaac another time, but for tonight I just wanted to write about the bear.

(Gabriel with Isaac Bear in ICU shortly after his open heart surgery, 8/8/2013)

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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 – Gabriel’s Treatment Plan

In Uncategorized on April 16, 2014 at 3:51 pm

I finally got a call today. As you know, the cardiologist brought the rheumatologist onboard, so that he could manage Gabriel’s medications to help with the PPS (Postpericardiotonomy Sydrome) flares. Since PPS is really the same as Percarditis, only caused by surgery, the rheumatologist manages those medications with more knowledge than the cardiologist.

The rheumatologist told me that they have decided to prescribe the Colchicine, and give it a try, starting tomorrow. He is sitting in conference with all of the cardiologists tomorrow to discuss what happens if the medication doesn’t work, but today Gabriel’s cardiologist and the rheumatologist agreed that the very next step will be surgery to remove the pericardium, if the Colchicine doesn’t work. I realize I haven’t explained much about the Colchicine, but I think I will explain that in the next entry. It’s an interesting drug that recently had a study published in the NEJM.

The rheumatologist also explained that the initial ANA testing that came back, was screened further, and tested completely negative for Lupus, so that is a real positive. His vitamin D was extremely low (an 8), and his liver tests show a slight increase in his numbers. He has gained 30 pounds since his surgery, all due to the prednisone, no doubt.

I am so ready for my son to be healthy again. I desperately want this medication to work. I just don’t want him to have to face surgery again. Yet I know that if that is what it takes to have Gabriel feel better again, then that is what they have to do. I just want Gabriel to feel like himself, and not be ruled by all of the pains he feels when he has a flare.

So tomorrow is the day for the new drug, and here is hoping it is the key to help Gabriel feel good again. It’s one of those times you wish good thoughts really could magically touch a situation and be the pixie dust to transform everything it comes in contact with, to rainbows and all things beautiful and right in the world.

Thankfully, Gabriel is feeling good currently. At least the sound of the conversation currently taking place while I type this out, sounds as normal between siblings as it possibly can be. Gabriel is currently advising his brother Ben that maybe a getting a girlfriend would make him a nicer person.

Ben: “Why wouldn’t girls like me? I am hot.”

Gabriel: *fits of laughter

 

(Gabriel having his IV removed after the MRI scan last week)

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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 – You Suck and I Feel It.

In Uncategorized on April 7, 2014 at 9:38 pm

I don’t even know where to start this mess I feel I am standing in.

Okay.. Gabriel had his MRI today.  I won’t be posting anything the Cardiologist said, until we get a definite. I am expecting a call tomorrow. There seem to be a lot of “possible” being thrown around, and after my initial reaction of crying my heart out, I needed to step back and wait until the doctors come back with some conclusions. Or at least some ideas.

I have been stressed over the complete lack of presence of people who I have called friend. It seems as soon as things have changed with my sons health, people just seem too busy to pick up a phone and call, stop by or text. It hurts to feel the absence of those friendships in a space I really need to feel some normalcy. I seem to have this unbalance of either being smothered with attention, or there is an absence. Maybe it very well is the stress I feel right now, as I worry about my sons health. Maybe it is the grief I am feeling as I struggle to realize that my life has been all about transitions this past year, and some seem to be happening faster than I am able to keep step with. Maybe I am just surrounded by assholes. Maybe it is a bit of all these things. I’m struggling tonight to find clarity so that I might pick up a task and deal with it in a way that enhances my life and not contributes to this feeling that things are falling further apart. All I really want to is just fall into the arms of someone and fall asleep. That is the only place I want to fall, but it seems that I need to deal with the reality of the situation at hand and make some changes. I hate change. Can life just stop for a moment and settle? Just joyfully settle?

I know this post is random and babbling. It all makes sense in my head, even though I don’t have the answers I need (or want) tonight. Since I need to create some of those answers on my own, I am going to do just that and take on what I can and let the ones I can’t change, go for tonight.

Yes.. none of this makes sense. Yet to me, it makes all the sense in the world.