Aside from the abdominal pain, well, more accurately, pelvic pain from whatever is going on in my special lady area, I also managed to hurt my back.
I got the general achyness/pain after attempting to go all gung-ho on cleaning out our rooms and organizing to boot. Then, I almost fell down the bottom flight of stairs, but was able to teeter and balance myself out all ninja like and hang onto the door handle.
I beginning to feel like I’m apart of that ‘Final Destination’ movie. Ill-fated … plagued … cursed.
Before I start to worry about being paranoid and my mental illness doing me in, I mean, don’t you sorta have to believe that when bad things continually happen, if you believe in being blessed when continued good things happen? Seems practical to me. Is that the voices talking? lol
Anyways, later in the day, Cleveland Clinic calls with my test results and they’re positive for anti-retinal antibodies and apparently what that means is I either have AR (autoimmune retinopathy) OR CAR (CANCER retinopathy)
Let us stop for a moment and appreciate this. Not only can I go blind and lose my mind, but I may have cancer as well? Hahahahaha. I couldn’t make this stuff up.
More bloodwork and testing …
The last couple days have been strange.
First, Ive been sick on and off for nearly two weeks. Nausea and pretty much everything I eat going right through me.
It started a couple days before my birthday, went away for a couple days and then back again right around the 1st of the month. I thought the 2nd bout was due to a medicine change until I remembered the first. Anyways, long story short, I took a pregnancy test and it was positive. I went to the doctor and it’s negative. Came home and took another one and its positive. Bloodwork from doctor’s office comes back negative. All things considered, it was a little bit of an emotional roller coaster. Shock, joy, fear, wonder, apprehension. I even dreamed about a little girl named, Lacy. Even joked with Jer about twins.
Now. it’s all numb and it’s probably better that way. I don’t want to think or concern myself with what else could cause 2 false positive pregnancy tests. Medicine? Cysts? Cancer?
I’ll just wait to see the doctor.
After almost 8 months of eye pain, vision loss and test after test that led us nowhere, I got an answer today and Im still not sure if it really is one or a definite answer. I still don’t know if can move forward with it or get proactive about it. I guess it’s an answer. A diagnosis, but the PROGNOSIS is questionable. I thought I would have more relief, but I just feel … numb.
I feel confused now thinking back on it. I have questions. Why didn’t I ask them?
The answer was central vision loss. That wold explain why my eye is missing details, i.e. can’t read small print, can’t focus, miss details in faces.
But what caused it? Is that why bloodwork is needed? Will the bloodwork only support the diagnosis or provide a prognosis as well? And what exactly should I be doing in the meantime? Is there anything that I can do? Should I be learning fucking braille? Why wasn’t it found by Batesy? (different neuro-opthamologist) Different equipment? Different test? Does it mean its gotten worse?
Im just fucking confused.
I need to make some phone calls.
Yeh. It’s been one of those days.
I cried. A LOT. Just bouts, or spells, of crying sporadically. Yes, like a crazy, hormonal woman. Just like that.
The first crying spell came in the car ride with my Dad to DBT this morning because it occurred to me that I had an appointment with Dr. Sue this afternoon and had no way to cover my co-pay because of the ongoing expense of DBT. That sucked.
Then I just couldn’t get it together from there. This led me to “call in reinforcements” for my emotional walls and I completely shut down and was unfocused for much of DBT. I was asked to “check-in” for the day and was evasive. I just would not. Even this small opening to utter words made the tears start again.
When getting in the car to head home with Mom, I was instantly agitated when she inquired if I “think this is working”. This being DBT. As if it were some magical wand that could be waved around and “POOF!” *all better*. Then, I snapped at the kids which made me feel horrible. So again, the tears came. I shoved headphones in my earholes and cranked some music which wasn’t meant for soothing. Obviously, that was unproductive.
Oddly, no, not oddly at all food was the rescue. Gross but instantly gratifying, McDonald’s food. (Note to self: Back to food log, do the next right thing.) I definitely don’t want that to get out of control again.
The thing that actually did help, was sharing my new slideshow and music app on the iPad with Mom and the kids. There’s something about soaking in good memories. (Side note: Mom seems more emotional lately too – this also made me snap back into emotional shape. That’s deep rooted, but not going there today.)
Talking with Dr. Sue also made me quite emotional, but it was a good conversation.
Dinner with the family at the table worked well at improving my mood, as well as working on a project together. I had the kids help me prepare a care package to my dear friend Darryl in Afghanistan. I was also to get some validation from therapist Lynn about my frustrations with DBT. Bottom line: I need to lower my expectations and just attempt to take away 1 new thing that works, for me, every session.
Here, at day’s end, I feel more at peace with the world that 12 hours ago when I was contemplating another inpatient stint. Really, its the last thing I want, well suicide would be the last I want and if it stops that, then I suppose it’s a very desirable thing when Im not feeling safe with myself.
I don’t know what tomorrow will bring, but I’m happy to have gotten through another day.
As Diva pointed out with a laugh the other day, I already have a life worth living because of my amazing kids and wonderful family, I just have to learn to LIVE it from moment to moment.
This was my Jedi’s eulogy for his best friend, Jedi Gino, at his funeral this morning
You will, throughout your life, be thrust into impossible situations by fate. When you find yourself in such a situation, you should always say “I’ve got a bad feeling about this.”
If an old man, rumored to be crazy, wearing a bath robe, claiming to know your parents, asks you to come fly away with him in his spaceship – say no. Old men are prone to stretch the truth.
That man that has your life planned out for you (and his plans are the total opposite of yours)? He’s your father. Deal with it. In the end, you’ll learn to respect him. And you might become him. So watch out.
You shouldn’t always listen to your parents. Sometimes it is smart to listen to little green men in your head.
Don’t be thinking about your sister during a big fight with Dad.
Teddy bears are your friend.
The tall, handsome stranger always wins the girl. Even if they have to re-write the plot and make her your sister to make it happen. If you are a short blonde guy, you will always and forever, for the rest of your life, have trouble getting the ladies to notice you. Even after you save them from disaster.
( Besides Luke Skywalker, guess who else is short and blonde? )
Good guys don’t always wear white and bad guys don’t always wear black. Just to keep life confusing
Never tell a teacher who’s been teaching for 800 years who to teach and who not to teach
There isn’t always time to discuss things in a committee.
Try not. Do or do not. There is no try.
Don’t give into your anger. Anger, fear and aggression lead to the dark side
If you do not believe, you will always fail
When judging people, size matters not.
No matter how big and cool a guy’s helmet looks, push him off a high place and he’ll scream like a girl.
There is no such thing as luck
You must follow your own path , no one can choose it for you
Keep your promises even if they take you far, far away
Wars do not make one great
Pass on what you have learned
Faith in your friends is a strength, not a weakness. A party of two can be very effective in chasing down the bad guys.
If you’re struck down now, you’ll can only become more powerful than can possibly be imagined!
No matter how deeply one falls into darkness, there is always hope for redemption Just when you think there is no more hope, there is more. Your sins can be forgiven and you can be redeemed.
Good always wins in the end. You can count on that.
Belief and faith are far more powerful than any technology man can devise.
Don’t underestimate the Force
In your pursuit of peace and justice, remember, the Force will be with you – ALWAYS!
I don’t even know how to begin to say what I have experienced over the last few days. It was a love beyond what the word love can fully capture. There should be another word for that. It was very intimate … and precious and heartbreaking and something I will never forget for as long as I live.
Jedi’s best friend, Jedi Gino, left us today. His 10 year old body held a soul bigger than it could have possibly held, but it did. I’m sure the papers will say that our GIno lost his battle to cancer today, but I can tell you that’s not true. The cancer won the battle with Gino’s little boy body, but his soul won the war. The war that tried to take over his and his family’s life, but it didn’t take his life. That boy was full of life. As I think of him now, that’s what strikes me still. The way he lived his life in the face of such a horrible disease. The treatments, the testing, the waiting, the way it ravaged his body. But Gino did not go quietly into a dark night. He left us surrounded by family and on a beautiful sunny day on a breeze.
My Jedi spent the last couple days at his friend’s side, playing with Star Wars actions figures. He would place a figure in Gino’s hand and direct it like a puppeteer with one hand, while using his other hand to animate his own. He would also tell him funny stories about Gino’s little sister being in love with him, or something that had happened at school, or even a private joke among themselves. He would place a Republic Guard action figure in his hand anytime he would need to leave. I could not think of anything more appropriate and it brought tears of complete pride to my eyes to watch. This was being a friend. This was fighting the battle the way Gino wanted to fight. Working around the limitations, but always working, always continuing to do exactly what they wanted to do.
When the hospice nurse leaned down to me and whispered that she thought my Jedi should say his goodbyes. I took Jedi onto my lap, on the floor right next to the bed and told him that it was time to say good-bye. He placed the guard back into his friend’s hand and then he leaned over and kissed him on the head, told him he loved him and told him that was ok for him to go. That he would always stick around and be there for his family. I kissed Gino’s head and told him how proud I was of him and how brave he was and that I would take care of Mom. I walked around the bed and hugged his father and kissed him on the check telling him that I loved him and then I embraced his mother as she sat in a chair, letting her go before we both broke into a sob.
The Jedi and I went into the next bedroom and sat on the bed, hugging in silence, but we didn’t cry. We had just witnessed a battle fought with valor and now that it was over, we were just in awe. Then Jedi got up and walked over to the window. He said, “Look at the sky, Momma.” I walked over to see for myself that the clouds has feathered out right over the house. A beautiful parting of the heavens to welcome their brave Jedi Gino home. Then my Jedi smiled and said, “The angels are coming now. It’s time for Gino to go with Jesus, Momma.” And with that he turned and walked out of the room and outside to where all of Gino’s cousins were playing. I sat down on a bench next to my husband and Gino’s Zito. I didn’t say a word. I really had none for what I had just experienced and I felt the need to protect it and hold onto it as long as I could in that moment.
A few minutes later the hospice nurse walked out onto the back porch and announced that Gino had in fact passed, probably just at the moment that my Jedi said he did.
I went to pull Jedi aside and tell him the news. It was the first time he cried. It was brief, but it contained all it needed to. He asked Gino’s Nonna if he could go see him one last time. We were allowed back into the room where my Jedi removed the guard from his friend’s hand and just held on. The hospice nurse was kind enough to offer him a canvas. She brushed paint onto both of their palms, Jedi decided that Gino’s should be red (his favorite color) and reaching down and Jedi’s blue (his favorite) reaching up. That was his idea and I have to tell you that as I sit here looking upon it, I see it exactly as he did.
They’ll always be connected, continuing to fight the dark side of cancer with The Force of love, but slightly out of reach.
I started DBT today, but only made to the last processing hour of the day. I ended up having to talk to a psych nurse for the last 2 hours discussing my reasons for being there. Not much to say about that that hasn’t already been said here though.
My Jedi saw Gino today for the first time since … well, since the decline started. I guess if I’m honest he’s been a decline since January.
This is where I get fucked up about shit. This is that part that boggles my mind. IF there is a God, no, I believe there is a God. That is not the problem. The problem is that if God is so loving and merciful, how exactly does this happen to a child. I understand that I can’t blame God for this. I believe there is as much evil in the world working to destroy us as there is good, if not more. I suppose just as there is a leader/ruler fo the good/peaceful/light side, there must then be an equal of ruling the bad/evil/dark side. Yes, just like Star Wars.
I only bring that up in the of the entry because Gino has always been “Jedi Gino” to me and everybody in the community and he is a whole force to be reckoned with. Such a spit fire and Jedi Gino has one I the best laughs I have ever heard.
So what’s plaguing me here is: Why God doesn’t intervene on his behalf? That’s what gets me fucked up. NO MOTHER should bear the weight of the loss of a child. It’s cruel. What’s more cruel is that not only does this child have to suffer, and there is no doubt he has, it’s an unimaginable suffering for anyone, much less a child. But last September, this child, this mother, this family was relieved to know that the cancer was hone. Jedi Gino has defeated the evil, merciless cancer he nicknamed “General Grievous”. BUT it came back, with vengeance and has totally ravaged his little body.
My Jedi, Gino’s best friend, finally got to sit with him today for the first time since not only his “Make A Wish” trip to Disney and the beach, but also 3 brain surgeries. He hardly resembled anyone we know but my Jedi was unphased. To him it’s his best friend through and through.
His Mom was so moved by Jedi’s actions and was brought to tears when she saw Gino responding to his mere presence. Gino even had the willpower to stay out of his room, awake, smiling and even laughing. What a gift Jedi gave to not only Gino, but his mother and whole family.
Words cannot express my pride. What an amazing kid.
I was discharged from the intensive outpatient program (IOP) today. That was a step that followed the partial hospitalization (PHP) that I entered upon leaving my admission on the psych unit.
I realize now that I haven’t done much journalizing. There really was soooooooooo much processing in PHP & IOP everyday and mostly through group therapy that I could have noted, but it was heavy and uncomfortable. They say that’s how you know it’s working. Learning to sit with your discomfort, to acknowledge it and sit with it is one of the most unhinging experiences I have had. That’s tough stuff. Sure, there were emotions, sadness that brought me to tears and anger that made me want to storm out and away … anywhere else. But I’m glad I stuck with it though and didn’t throw something at Larry. Nicknaming him LarBear in my head definitely helped me cope. SEEEEEEE? Coping. Check.
I find a mentor in mindfulness in my psych nurse, Maureen. I love Maureen. What a calming presence she is. I took so much away from her lessons about the way thoughts can control you and how you can acknowledge, identify, process and actually release them. Fang v. Wise Mind.
Wow! Just so very much.
Tomorrow, I start Dialect Behavior Therapy (DBT) which supposedly changes the way you talk to yourself regarding your thoughts. I think personally that if you can change your thoughts, you can change your world and it’s time to change my world.
Im also back in individual counseling. Lynn is someone I can respect. Im starting to identify and deal with my traumas. IT makes me feel like crying. The body reactionary things that still happen because of the traumas that El Chuba Douchebag caused … I need to deal. I don’t want him to still have any effect in my life now. That piece gets me very frustrated.
I realize now that these traumas have been resurrected because of control issues. Me losing control to the medical mishaps led to me mentally reattaching to the last place where I lost control. Unfortunately, that all revolves a very abusive relationship.
BOOM! I got this shit down.