Jedi Gino

September is Childhood Cancer Awareness Month. Please read this one story and know there are many more. Be aware that children can’t fight cancer alone, it takes a village. They need you to help spread awareness, so that more than 4% of cancer research funds are allocated to childhood cancer, so new drugs are finally developed after no progress in 20 years. Please go GOLD for the kids this month. Wear it. Change your profile pic on social media. Start a conversation. Ask for gold ribbons at retailers. Tell them why. Change the world.

Stephieopolis

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. Intimate? Yes, it was very intimate … and precious and heartbreaking and something I will never forget for as long as I live.

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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 Jedi 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, it didn’t take his life. That boy was full of life. As I think…

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I’m not going to “get better” and it’s ok.

If you had asked me four years ago, when my failing health finally pushed me out of the workforce, what the hardest part about “being sick” was, I likely would’ve talked about the physical pain or mental anguish of facing my own mortality. Recently though, it’s been others’ response and receiving “feel better” sentiments. It’s not that I don’t appreciate them because I most certainly do appreciate anybody’s care and concern for me. It’s a cold world and any notion of warm in welcomed.

Maybe it was just easier to take ten years ago when I was hospitalized with “the unknown virus” and sky high fever for a week. Then the initial fibromyalgia diagnosis. Likely because that’s when I still believed I could get better. But when my miscarriage finally pushed my immune system out of whack and the vision loss pushed me over the mental edge, I was down for the count. It took another year before they found the antibodies and scleroderma attacking the tissue throughout my body, destroying my gastrointestinal tract and causing gastroparesis.

Now, the thing is … I’m not going to get better.

I realize people don’t want to hear this. I get that we wish things were different. People may even think I’m giving up, when in fact I’m simply giving in to the reality of my new life. This is something, through cycles of hoping and feeling disappointed, deciding to give up hope in order to avoid the pain of disappointment and the sadness and then the relief of surrender, that I’ve accepted in the years since my diagnosis.

This much I can tell you: Nonacceptance just increases suffering and I think the one thing we can all agree on, universally, is that we don’t wish to suffer. Acceptance doesn’t mean that I’m rolling over and taking it either.

It’s just that I have finally arrived at a point in my life that is all about accommodating to realities,  living a life worth living despite my limitations and appreciating so many ways in which I’ve “grown” only because of this illness. If it weren’t being trapped in my house and bound to my bed, I wouldn’t have realized how many of the little things I miss on a daily basis. Perhaps these are things that other people can appreciate without being sick and having so much time on their hands to roll things around in their brain, but for me, that’s what it took. For that, I’m actually very grateful.

Maybe at this point you are asking yourself what you should say or do if you have someone in your life with a chronic illness. The one thing I want you to take away from this is that we don’t need you to make it better.  We need your time, compassion and most importantly, your love. Only love can make it rain the way we need it to. Only love can quench the thirst we have for life that we may be having a hard time experiencing for ourselves. Texts and emails are great, but phone calls and visits are more sincere. Your time is such a precious gift of investment in our knowing our worth hasn’t diminished because of our illness.

Better a single day of life seeing the reality of arising and passing away than a hundred years of existence remaining blind to it.”—THE BUDDHA

Fat discrimination in healthcare

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I have to vent. I have to say this. This needs to be said.

I am sick and tired of doctors associating and dismissing everything if you are a patient who is overweight, to you being overweight.

Yes, I am overweight by medical standards. I know that. I know how much I weigh, I know my BMI. But I also know that I eat well and I exercise. So, while my weight may not fit into your box, if you actually looked at the food and exercise I log, instead of down your nose at me, you might discover something else. You know, something you might discover if you actually PRACTICE medicine. What if fat is a symptom and not the cause?

I have PCOS. I have autoimmune antibodies. Antibodies attacking my optic nerve. Antibodies attacking my connective tissue, scleroderma. Scleroderma has caused me to have gastroparesis. Gastroparesis makes me eat a low residue diet. Low fiber.

So when Im suffering from excruciating stomach pain and you look at me and assume I need to eat better, eat more fiber, that’s actually the WORST thing I could do. That would cause an obstruction. It could kill me. I know it goes against everything you’ve been taught about how the body works and what we should eat, but guess what? Its how MY body works. Try actually living against all the things you’ve been taught about eating.

All bodies are different and should be treated as such. I know you’re taught to look for horses and not zebras, but zebras exist. A zebra is never going to be a fucking horse no matter how much you try to make it one.

Rant over.

An American Emergency Room

I spent eight hours in the emergency room last night and the early hours of this morning. It was by far one of the worst experiences I’ve ever had at an emergency room. This is saying a lot since I have a lot of experience with emergency rooms due to my chronic health conditions. Usually when I go to an emergency room it is because I need fluids or antinausea meds and sometimes even pain medication.

It started Friday morning. I went to the bathroom and my urine was the color of tea. Obviously, your urine shouldn’t be this color. Anyway, about an hour or two later I started experiencing stomach pain. Because of my gastroparesis this isn’t something I thought I much about. Stomach pain is just something that I deal with every day. A little while later though the pain started to wrap around into my upper back. Then I got nauseous. Couple all these things together and I was pretty certain that I had another kidney infection. This is something that happens with scleroderma. I knew that if my doctor couldn’t see me this was going to mean a trip to the emergency room for fluids and antibiotics. Such is my life. I called my doctor and she referred me to the emergency room.

It was dead when I arrived. I was so grateful for this. They took me right back and started it work up. The doctor came in to talk to me. He was a complete ass. (sigh) Unfortunately this is something I also have a lot of experience with. I knew this meant nausea meds but nothing for pain and not to mention it because then Im drug seeking. Thanks, pillheads. Whatever. I would wait for the test results and go from there.

Turns out it wasn’t my kidneys. He said it was my liver and that I needed an ultrasound. Anytime you think a new organ has begin being compromised by scleroderma it hits you really hard. My brain function became compromised. He began telling me that because I was at a satellite emergency room from the main hospital, that their ultrasound tech had gone home for the evening and I would need to go downtown to have the test completed. He wanted to send me by ambulance which I was not down for. He told me he would call ahead and let them know that I was on my way. The nurse came in with my discharge papers and started to remove my IV. I inquired if I was going to need it again when I arrive downtown. She wasn’t for sure but said that if I wanted to keep the IV I would have to take an ambulance. Say what? Is it just me or does this make no sense?

When I arrived downtown I was sure that it was a full moon even though I had paid no attention on the drive because the emergency room was packed full. There were people sitting in wheelchairs with obvious broken bones, people throwing up into plastic bags, a woman in a chair who I wasn’t even certain was alive anymore, it was plain crazy. People were getting Jimmy Johns delivered. They took me right back to be triaged by a nurse. I thought that maybe I was getting to bypass the crowd. But no such luck. The only people who were bypassing the immediate waiting room were women who were in labor. Eavesdropping on some conversations I found out that people had been waiting there in excess of six hours. What on earth is the point of having satellite ERs if you don’t staff them to the point that avoid sending people to the main campus and over extending the staff?

I waited nearly 2 hours to be taken to have the ultrasound. Then I was taken back to the waiting room. I started to entertain myself by guessing what people were coming in for as they arrived and brainstorming their diagnosis by listening in on the symptoms they would report. I can tell you this much, I have been watching way too much “House” on Netflix.

Two hours later a nurse came out with a file and called my name. She led me and a man I was sure was homeless and just looking for a place to crash for the night back into the elusive exam areas. She didn’t even attempt to settle me into my designated area. She more or less pointed and then mumbled the number 13. At last I had a bed. I wasnt given a gown. I did not have a blanket. I did not have a pillow. Hell, I did not have a way to contact a nurse should I need one. I just curled up in a ball and waited. And waited. And waited…

Eventually, my mother, the sweetest and most reserved person I know, became so agitated she walked to the nurses station to ask exactly what it was we were waiting for. She inquired why if the test was done and I didn’t need to see a doctor would they bother keeping me there, occupying a needed bed and also if it was important, how they could let someone with a liver complication wait so long to be seen. They told her that the doctor had my file in her hand and would be in ASAP.

An hour later the resident doctor came in and started to talk to me about the findings on my ultrasound. She used a big fancy word and then started to talk about my gallbladder. I don’t have a gallbladder. I had it removed in 2001. I had told the doctor at the first emergency room this. I had told the ultrasound tech this. And now I was explaining to a third person the same thing. She apologized, saying it had been a very overwhelming night. She said that she would need to review my file with her supervising doctor and he would be in to see me.

The supervising doctor comes in and tells me that my ultrasound revealed that I had a “fatty liver intrusion”. He explained that this was a chronic condition for which I would need to see a gastroenterologist. In summary, not an emergency. I am stupefied at this point. I’m tired. I’m nauseous. Im still in pain. Im frustrated. So I asked him why if this was a chronic condition had it never showed up on any blood work before and would the symptoms show up in an acute manner. He said that someone had probably messed up. I assured him that with my conditions, constantly getting bloodwork, and having the ability to read the results online, I had never seen elevated liver enzymes and was concerned that this was a complication of my scleroderma. Question ignored. He told me that he would get me medication for the nausea and pain I was experiencing. Then he inquired what I wanted for the pain.

Excuse me? Is this man not the doctor? Isn’t he supposed to make this decision? What am I supposed to say to this? I just stare at him. My mother says that usually the doctors treat me with dilaudid in the emergency room. He tells us that he is limited on what they can write a prescription for. He says he will write a script for Percocet and prepare my discharge paperwork.

I’m allergic to Percocet. All this information is not only in my file but has also been repeated to numerous people at this point. After eight hours all I have to show for my time is an ultrasound, that apparently didn’t even reveal the absence of my gallbladder, the promise of a prescription that I have an allergy to and have been shuffled off to another doctor so THIS doctor doesn’t have to practice medicine. Not to mention that my psyche is now completely twisted.

At that point I put my coat on, grab my bag and tell my mom we’re leaving. I didn’t wait for discharge papers. I just left.

That’s all I have to say about that.

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No Child

I have tears streaming down my face and can barely see as I type but I have to take a minute to say this…
As someone who lives with a painful, incurable disease everyday, I can tell you it’s physically and emotionally exhausting. It’s all consuming sometimes. But I am an adult. When I think I can’t take anymore, when I’m dreading the next test or needle, I think of Gino. Then I suck it up and get it on with it.
Tonight, another family has lost a child to cancer. Her brave fight is over and she rests…at peace. As a parent this breaks me. This HAS to stop.
Without a doubt, everyone who reads this has lost a loved one to cancer or at the very least knows someone who has. Just stop and think of that fight. The appointments, the tests, the treatments, the pain…now imagine a child going through that…if you can even bear the THOUGHT imagine it’s your own child.
We all have diseases or causes that touch our lives for different reasons but childhood cancer, not one type, but ALL of them, is something we ALL need to stand up and fight about NOW. These are kids, babies even, fighting cancer. I implore you to get involved. Become aware. Demand pharmaceutical companies stop looking at bottom lines and turning away because it’s not profitable and look at the value of the lives lost, the potential of these children who have their whole lives ahead of them. Donate to Children’s Oncology Group Foundation who are tirelessly working towards a cure. If you go pink this month, for God’s sake GO GOLD the month before. September is Childhood Cancer Awareness Month. Ask a local business to go gold too. Commit to every year. DO SOMETHING. Stop these numbers from rising. Don’t wait until it’s your child.
ANY child with cancer deserves the world to stand behind them, NO, we should go before them. We should fight to the end that no child has to.

Ask

Cats seem to go on the principle that it never does any harm to ask for what you want.
~Joseph Wood Krutch

“Today, ask for what you want for the practice of asking, just to see what happens, not because you have an expectation that you will get what you ask for”

THIS was today’s awareness exercise. (There’s an app for that! {im serious} Its called ‘Transform’ and it gives you an awareness exercise everyday.) Some awareness exercises are harder than others for me but I try to do more than roll my eyes.

This exercise was more difficult. I am not the kind of person who likes to ask for things. After years of being in an abusive relationship in which everything someone “did for me” meant I owed something, I became rather good at not asking for things. Most times I would just resolve to doing it myself, but I can admit to dropping hints but really i just stopped having expectations at all for anything. I did what I did for the purpose of mu own integrity and never thought much of expecting anything or much less asking.

But after this suggestion and a follow up gut check from my therapist, I realized that I wasn’t doing myself any favors and I was actually having my feelings hurt. Whether I had expectations or not, I NEEDED help and I was beginning to get the impression that very few people in my life really gave a rat’s ass about what I needed.

But guess what? I did it. I asked for exactly what I needed and more than one person has already granted my request for help.

So if you are reading this I issues this dare, no, I double dare you to ask for exactly what you want from someone and see what happens.

Ask your partner to buy you flowers.
Tell a friend you want to meet for coffee. Tell t
Tell a family member that you want to talk about the ‘elephant in the room’.

Just Do It