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Posts Tagged ‘lgbt’

My Big Fat Life – Orlando Shooting & Church Activists

In Uncategorized on June 12, 2017 at 10:31 pm

A year ago 49 people were gunned down in a nightclub in Orlando. They were targeted because they were gay.

I don’t talk much about the LGBT community since I left it behind, but when I see headlines that scream of violence against those who are victims of hate crimes based on their sexuality my heart is reminded of the struggle of what it means to be gay in America. While it is true that gay people have it considerably better than in most countries, it still isn’t a very good threshold to measure progression when it comes to the acceptance of others based on who they choose to love.

I came across a Facebook page recently of a woman who claims to be an activist for God. Her name is The Activist Mommy. I checked out her page after someone posted a Change.org link regarding a plight to get her page removed from Facebook. I highly doubt it will do much because people still have a right to be an asshole in the U.S., and freedom of speech is a vital thread of what makes us so unique as a country. People have a right to their opinion, no matter how much a douche it makes them look. The perk is we get to see who people really are when it comes to such political and religious views, so we get to know who to avoid.

I read her page looking for some semblance of compassion or love, and it wasn’t a huge surprise I didn’t find any. I don’t think it comes to the surprise of any in the community that the church has long bred an attitude that tolerance is somehow acceptance. I don’t even like that word “tolerance” because it somehow equates patronizing in my mind. People who strongly believe in the church (I say church for a reason), feel it is their duty to show just how much they disagree with conceived sin, so they post memes on Facebook, make status updates, hit the like button on every article that validates their belief, and comments on news feeds. They shout a hearty “AMEN” each time the man behind the pulpit proclaims they are making a stand on sin, as though the louder they agree it equals wearing a badge of honor to measure their integrity. But… it’s not.

Even if you believe that being gay is a vile sin that you act upon, the bible is still very clear about how we are to love. In fact, the act of love is spoken more than any scriptures you might find to address that being gay is a sin, and yet it is the single most act that most people fail to do well. Whether in relationships, to strangers, our neighbors, and friendships. Heck, I will admit I often suck at being nice to people when I feel I am right about something and they are in the wrong. When we feel we are right about something, it trumps our ability to love actively. We get so fixed on being right, and proving it, that we forget there is another person involved in our actions; the person on the receiving end of our stand or response.

I don’t doubt that some of these people believe they are doing God’s work, and believe that they are making a change in the world. On the other hand I know they are not doing anything other than creating more anger, hurt, and validation that God is nothing more than an angry man who is more interested in hurting us creatures on a spinning blue marble, than loving us. Yet, isn’t love the basic foundation of His message? Let’s just believe for a moment that all people believe in God, but who would want to serve such an angry and quick to condemn deity unless we had the fear of eternal damnation looming over us? No one. That is why the message of love is the most important message of all. The simple act of love without condition is the hardest to do for us. Perhaps that is why it has been written about so often. The message has to be driven to us. Paul wrote letters to the church about it, and depending how you feel about the truth of the cross, God sent His son to show us. Just being kind to others can be a challenge, let alone loving others we feel are in the wrong. I also find that the actions people get most fired up are the ones they either struggle against themselves, or can’t ever imagine acting upon. The first lending to the belief that if they fight against it enough it somehow will create almost a hatred for it and therefore reduce the temptation, and the second because people always argue what they don’t understand.

Love isn’t “tolerating” or accepting the acts of another as correct or in alignment of our own personal convictions. It’s loving that person regardless of what we personally believe. Our morals are separate from the act of love. We can love someone and have no relationship with them outside of our feeling for them. In fact, at times that is the best for everyone involved. I love my sister, but I can’t have a relationship with her because I don’t agree with her choices. Her choices affect me when she chooses to use drugs. I don’t want that around me, or my family. But I do love her. I want the best for her, yet I know that a relationship with her is not the best for me. She does really dumb things when she uses, and has removed my ability to trust her judgement. Does that mean I am going to yell and scream some condemnation at her every time I see her? No. Does my lack of doing so somehow translate that I am accepting or tolerant of her choices? Nope. It means I love her, but I choose not to allow her choices to influence my daily life anymore.

I have spent a lot of time talking to people during my time in the community. I have asked questions, listened to stories, and hurt as I listened to the damage the church has done. A majority of people in the LGBT community have already heard the message. There is nothing new you can scream from a picket line or post on Facebook that is something new to them. Most of them were raised in the church and already know the message. Many of them are still Christians and long for a relationship in a church; for human connection. They have struggled in their hearts knowing the message of the church, and their natural attractions. They have been at war with themselves so many times, there is no new scar you can leave that will laid upon three more. What they haven’t heard enough of, is love.

Chances are if you move about in society, you have already come in contact with a gay person. The lady behind the register, the Dr. treating you at the hospital, the vet who cares for your pet, the stranger you bumped into at the store, the man behind the ticket booth at the movies who sold you your ticket to the movie you have been waiting to see for months…. you get the idea. Chances are you have already come into contact with someone who is gay. Did you need to know their sexual orientation to be kind to them? Of course not. The act of being kind requires no back story. It requires nothing more than consideration without prejudice.

Sometime ago I had an argument with my boyfriend. I can’t even recall what it was about because so much time has passed that whatever it was obviously wasn’t that life altering. It’s my nature to walk away when I get upset.I need to allow the logic to rise above the emotion so I can think clearly, and the only way I can usually get there is to walk away to a quiet space and just ride it out. It’s a good thing because I can be quick to say really shitty things when I get upset. I’ve worked hard to be more careful with my words, even though I don’t always succeed. The other reason is because I grew up not being allowed to show emotion, so I instantly just walk away because I am used to having my thoughts and feelings discarded. What I can tell you I recall about that day is when I stood up to walk away and he reached for me. He put his arm out, touched me and gave me a hug. I couldn’t even tell you what I was wearing that day, but I can tell you how I felt in that moment. One simple action that isn’t so simple when we are hurt gave me a sense of love, security and acceptance regardless if he was disagreeing with me or not.  He wasn’t showing me a message of tolerance, or acceptance, but love.

Just love.

 

The 49 people who died because someone didn’t know how to love:

Edward Sotomayor Jr., 34

Stanley Almodovar III, 23

Luis Omar Ocasio-Capo, 20

Juan Ramon Guerroro, 22

Eric Ivan Ortiz-Rivera, 36

Peter O. Gonzalez-Cruz, 22

Luis S. Vielma, 22

Kimberly Morris, 37

Eddie Jamoldroy Justice, 30

Darryl Roman Burt II, 29

Deonka Deidra Drayton, 32

Alejandro Barrios Martinez, 21

Anthony Luis Laureano Disla, 25

Jean Carlos Mendez Perez, 35

Franky Jimmy Dejesus Velazquez, 50

Amanda Alvear, 25

Martin Benitez Torres, 33

Luis Daniel Wilson-Leon, 37

Mercedez Marisol Flores, 26

Xavier Emmanuel Serrano Rosado, 35

Gilberto Ramon Silva Menendez, 25

Simon Adrian Carrillo Fernandez, 31

Oscar A Aracena-Montero, 26

Enrique L. Rios Jr., 25

Miguel Angel Honorato, 30

Javier Jorge-Reyes, 40

Joel Rayon Paniagua, 32

Jason Benjamin Josaphat, 19

Cory James Connell, 21

Juan P. Rivera Velazquez, 37

Luis Daniel Conde, 39

Shane Evan Tomlinson, 33

Juan Chevez-Martinez, 25

Jerald Arthur Wright, 31

Leroy Valentin Fernandez, 25

Tevin Eugene Crosby, 25

Jonathan Antonio Camuy Vega, 24

Jean C. Nives Rodriguez, 27

Rodolfo Ayala-Ayala, 33

Brenda Lee Marquez McCool, 49

Yilmary Rodriguez Sulivan, 24

Christopher Andrew Leinonen, 32

Angel L. Candelario-Padro, 28

Frank Hernandez, 27

Paul Terrell Henry, 41

Antonio Davon Brown, 29

Christopher Joseph Sanfeliz, 24

Akyra Monet Murray, 18

Geraldo A. Ortiz-Jimenez, 25

 

My Big Fat Life – Dating Men

In Uncategorized on January 5, 2015 at 5:45 am

Dating men.

Years ago when I used to date men my friends would find my dating stories entertaining. Not because they were good, but because my dates were bad. Very bad. From the guy who came up behind me and grabbed my hips while thrusting into me (I had innocently bent over a display in the store… yes, he did this is public) to the guy who tried to convince me that God didn’t want him masturbating so he needed me to give him a hand job. It seemed my dates were more set ready for a comedy tour than to set the stage for a successful relationship. For the record both of those were first dates.

Dating women seemed to be easier in a lot of ways because we communicated in a very personal way. We would spend the first hour of a conversation learning about each other. Our favorite colors, band, movie, where we grew up and all of that basic information we talk to people we are interested in getting to know better. Men, however, have proved to be a different experience.

Since I started to date men again, I’ve been on a few dates.  A sad majority of them have been listening to people tell me what a rotten awful person their ex is, and/or how they are just looking for a good time. One guy spent an hour telling me how wonderful he was, and another showed up looking NOTHING like his profile photo (this is also the guy who also informed me in the middle of dinner that he was too distracted by my breasts while looking at me, to even look me in the eyes while talking). Since a majority do seem to want to talk about their ex, I’ve I considered starting my own mobile dating crisis counseling service. Possibly setting up an app that allows guys to book a date with me. Payment in form of dinner, and random compliment not related to my breasts.

*make note to invest in tacky shirt that says “My other eyes are green” *

Now… I am not trying to make men seem shallow. I don’t believe they all are. I just simply have had some pretty bad experiences. In part because I guess I expect men to communicate the same way I would if I were interested in getting to know someone. I know I wouldn’t spend time starting at their chest, and I certainly wouldn’t spent the first 45 minutes of being in their presence talking about how awful my ex is. I just wanna know what your favorite pizza is, and if you can tell some stellar jokes.

I’ve made a big change in dating, and I expected it would be a learning curve. I’ve gotten to sharpen up my listening skills, and that’s always a good thing, right?  I guess a part of me is still just confused about the communication piece. Or maybe I’m not, and I still don’t understand why someone wouldn’t want to take the time to get to know me as a person or involve in a two way conversation over dinner. Is it really that hard to ask someone what their favorite color is?

Green.

So here I am on this adventure changing my whole way of life. So far it’s been interesting, and not exactly in the best way. But I guess it is all how you look at it, so maybe I will start writing a comedy sketch or shopping around for reality shows that might want to follow an out of the closet heterosexual, who is raising 4 boys on her own as we weave our way through the medical journey of one. TLC might be in the market now that Honey Boo Boo is off the air.

I know the differences between how men and women communicate is usually pretty different. I get that. Despite knowing this, I am still holding to my desire that someone might find me fascinating enough to want to know what my favorite flower is. If I don’t, I may start to ask people to sign releases and my dating life may soon be coming to a stage near you.

I’ll call it the Diaries of Dating: A One Woman Show. It’ll tour for one date only. I’ll whine about my ex for the first 45 minutes of a set, and then get too distracted by my own breasts to continue talking while looking at the audience.

I think I have the perfect shirt to wear for this.

MY Big Fat Life – Tolerance, Acceptance, Pray Away The Gay, and Facebook

In Uncategorized on November 6, 2014 at 12:20 am

Recently I was unfriended on Facebook.

Before I start to sound like a whiny teenager (soory teens, but you really do get freaked out about this stuff) I have to say this was someone I considreed a realy close friend at one time. Since unfriending on social media is the new “I don’t want to be your friend anymore” talk, of course it is going to sting a bit.

The reason why I was unfriended is what really gets me though. I had posted on someones page about my journey this past year. She (the friend) somehow took it as me saying you can *pray away the gay*. Gosh how I despise that saying. I wasn’t even saying that. In fact, I never even said that people can “pray away the gay”. However I also won’t minimize the role my faith has served in how things have changed for me this past year. But that change was between God and I, and a change in my faith, not some act of praying anything away.

See, I know how that “pray the gay away” thing works. It doesn’t. At least not in the traditional way the church teaches. I’ve been there. I have spent countless hours seeking pastoral counsel, asking for prayer at the altar, talking to people, praying for God to take the thoughts away, to remove the attraction, to not send me to hell because I couldn’t seem to control my thoughts when I saw an attractive woman, and pretty much everything else I could think of to “pray away the gay”. I know how hurtful that saying can be, and I know the damage it can do.

None of the above mentioned acts changed who I was. Of course they didn’t, because I was going through church approved actions expecting a result. I was in desparate places begging for changes, change of mind, change of desire, change of who I was. But none of those things changed who I was, and unless you have been there you can’t really understand that conflict between someone who identifies as a lesbian, and their faith. You can’t understand that pain that comes with it; the feeling that somehow God just doesn’t care and tossed you to the dogs to fight this conflict on your own. It really bothers me that someone could even think they have the right to challenge me on my own personal journey from where I have been, to where I am.

Let me set this out there right now. I don’t know where people stand in their own life. I can only say this is where I am, and my change came from a very quiet place between God and I, and I won’t deny the faith factor because it makes someone else uncomfortable or feeds into their need to define me based on their experiences.

I understand there will be people who will think I am really bi, or wasn’t even a lesbian at all because of this. But that isn’t their right. It isn’t my right to define you, and it isn’t your right to define me. I have no desire to even start to tell people how to *pray away the gay*. So please don’t point fingers and demand that people accept and tolerate you and your choices, while choosing to define and accuse me for living mine. Especially if you have never lived a majority of their life struggling with the idenity of your sexuality, and faith. You don’t get it.

Someone said it perfectly to me recently. He said ” I’ve found that intolerant people are just that. Usually in most aspects of their lives… So all you really lost I suppose is a person who thinks it’s ok to be them but it’s not ok to be you.” His words have stuck with me this past week, and made a real difference. It’s so true. In fact, it’s so perfectly said I don’t even need to elaborate.

With that, I will just leav this here. This is the song that came to my mind when I thought about writing this blog. I was going to post something else, but I came right back to this. I think it’s because I am not angry, I am more hurt than anything. I think this song perfectly reflects the place where I am writing this from. This life has too much sepration amongst us all. It would be such a bettrer place if we could somehow find a place where we respect each other for who we are, and not what we are.

Peace.

My Big Fat Life – I’m Not Gay

In Uncategorized on October 16, 2014 at 10:18 pm

This is possibly one of the most difficult blogs I have had to write.

I know this will be pretty unpopular, and I am prepared for the backlash of previous readers, but it’s something I simply need to talk about.

When I started this blog I was hurting.. really hurting.. from the break up of the relationship with my *now* ex Registered Domestic Partner. I was in a place where grief seemed pretty all consuming, and I had no doubt I was truly devastated that things didn’t work out. I also didn’t question my sexuality, because as far back as I can remember, I was attracted sexually to women. Things with men didn’t seem to *work* in a lot of ways, and things just seemed so much more natural with women.

When I was in my relationship with the ex, there was one guy I had met that I was attracted to, and it surprised me. I wasn’t sure what to do with the attraction I felt, and I put it away. The word ‘bisexual’ in the LGBT community is one that is often seen with a lot of discrimination, and prejudice. I didn’t think I was bisexual (and I don’t think I am now), but I also didn’t know what to think.

I continued to date women after the ending of that relationship. Though I wrote about those relationships from time to time, I also kept a lot of it to myself. I never really liked the idea of writing about my dating life to begin with. One, I didn’t want to make the person uncomfortable, and two.. well, I didn’t want to write about it and then when it ended have it be another failed relationship that became the focus of my writing.

When Gabriel had his surgery last year, and I was in a relationship at that time. I won’t go into details about what happened, though I know a lot of it I under a tremendous amount of stress. I was also at a cross roads in my personal life.

When you are faced with the reality of life in such a raw way, you start to ask yourself questions. You start to wonder if you are really on the right track in your own life. Maybe career, personal life, romantic relationships, friendships.. so many areas. I thought I had known who I was, what I wanted, where I wanted to be. I had plans for life, and I was trying to live out my goals the best I could.

I am not so sure anymore.

The past 6 months, I have been on some dates. All those dates were with men.

Now, please hang with me. I know some of you are automatically labeling me as a bisexual. I can almost hear my ex screaming “I knew it!” in the background (that is in no way to suggest she is actually doing so), but let me make this clear.. I do not label myself as a bisexual. In all honesty, labeling me is the least important thing about this entry.

Over this past year a lot of things have changed in my life, and one of those changes has been what I feel I desire in a relationship. I can’t explain to you exactly where and when my heart changed, but I can tell you that today.. here behind the screen of the computer.. is a woman who realized that I am not the certified, card carrying, absolute lesbian I believed I was born to be. I am a woman who doesn’t want to label herself in anyway, other than to say that I fully believe that dating women is not where I want to be anymore. It’s not where I believe I am to be anymore.

I am not sure how to even begin to talk about why I believe the changes came about without sparking some serious debate about faith, but yes.. I am a Christian. I have never hid the fact that I believe in God, and I can’t explain how these drastic changes in my very being have taken place because it’s such a personal experience. I can only tell you my experience is that I am no longer attracted to women either sexually or romantically.

So there you have it.

I’m not gay.

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 – Last Pill

In Uncategorized on June 12, 2014 at 1:07 pm

June 11th was supposed to be the last day of prednisone, but apparently I counted the days wrong, and it was this morning. This day has been a dreaded coming.

When I was putting his pills in his medication dispenser a few days a go, I started tearing up. The forced reality that this is it, really hit me. This is the last time the Doctors are putting Gabriel on prednisone as a treatment for his condition, and we are cautiously hoping the colchicine works.

Tomorrow marks the last day of school for him and his brothers, so I’m pushing the homework to get the boys finished. It’s been a really stressful week around here preparing for the end of school, and the end of Gabriel’s prednisone treatment. I am looking forward to school being over for a few months while we get Gabriel’s health sorted out. I was really hoping to do something fun for the kids after school released, but I have no clue what I can do that will keep us close to home just in case Gabriel gets sick again. I also need to start looking at the fact that I need to move. The boys and I have been cramped in this stupid apartment that the ex and I moved into as transitional housing until a home was purchased for us to live in, but we have outgrown it and honestly I would love to have a washer and dryer of my own, instead of using the laundry room. The money I am spending to live here and pay to do laundry, isn’t really putting my money to work to help a single parent who needs every penny possible, to feed 4 boys. If you are reading this and know of available housing, please feel free to email me. You can reach me at lesbian_spaghetti@yahoo.com.

So here we are, and here we go…

#FeelsLikeAWeekOfMonday

(Gabriel on the morning of surgery 8/8/2013 and 5/2014. Less than a year difference and you can see how prednisone and this illness has taken it’s toll)

Image

 

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 – 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 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.