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.


Relocation:Pen to Paper; Pros vs. Cons

I spent the weekend in Kentucky with my Mom’s side of the family. There is something about changing my surroundings that deeply affects my psyche. I didnt feel weighed down. Even went for a jog. I breathed easier, slept so much better. Drank a lot of sweet tea. I swear it heals the soul.

Everytime I take the kids to visit at Nana’s and they get to playing with my cousins I hear the same thing: “Momma, lets move to Kentucky.” I always think that would be nice but the reality of it is tough. I sit down with pen and paper and start the pros and cons: Hubster finding a new job, selling and buying a home, changing schools, everything surrounding My Pickle, my doctors, our friends here. There’s a lot.

This time the suggestion not only came from the kids, but various family members and as I went through my list of issues, there were less negatives and more positives in weighing a move. My husband isn’t happy in his current job and layoffs have not only been talked about but happening all around him. He’s already circulating the resume. With his Mom and grandparents having passed away, he has no real family strings tying him here. The housing market is up in our area and our house would likely sell fast and leave us with a hefty chunk of change. We could buy a house with more land like we’ve wanted much cheaper in Kentucky. My Pickle will be headed to college and most college kids live away from home, which will not only be good for him, but if Im honest, it would be good for me to loosen the leash too. Jedi is switching to high school, Diva to middle school. It’s actually good timing where that’s concerned. People travel from all over the world to get treatment at Cleveland Clinic. Id be 6 hours away. And also, my EX wouldn’t know where I live. No more late night drivebys and all the nerves surrounding holidays and his unpredictable behaviors. AND there’s REAL potential for my husband and I’s little idea for our own business. Our friends will travel, we can travel. Lastly, I was raised in the South. Yes, Im pretty liberal but Im always gonna feel more at home with dirt on my jeans and sweet tea in my hand, than all prim and proper lady with a “pop”. Id take a good ol boy, than a suit anyday of the week.

Holy crappoly, ya’ll. This could happen. For serious.

I had a lengthy talk with Hubster last night and reviewed all this with him. He sat listening, quietly. At the end I said, ” Well babe? Whadaya think?

Let’s do it.”

I was in a state of shock. I didnt know whether to be completely terrified of all of this or to jump up and down. We said our I Love Yous and Goodnights. I fell into a completely peaceful sleep.

I woke up this morning with a new resolve to let go and let God. Be vulnerable. Caution to the wind. Jump. Accept it as an adventure.

Husband has already started applying for jobs.

Off we go. Into the great unknown….


Things kids say

Jedi: What does it usually mean when your Dad says “Ill think about it?”
My Cousin: Depends. What was he doing when he said it?
Jedi: Watching a movie.
My Cousin: Nothing. He just gave you an answer so you’d leave him alone. Ive thought it was a real answer before. It’s just something he says so he can go back to watching the movie. He’s not thinking about nothing.

The Little Things

Yesterday I came upon a blog of a neighbor Mommy blogger which she described her little mornings rituals, the simple joy found in a child’s sleepy smile and how these little moments mean so much. This coincided with me working on importing nearly a decade of blog entries and coming to the realization that later this year I will have a son entering college, a son entering high school and my babe girl entering middle school. Wasn’t it just yesterday though that I was drinking coffee, listening for those little pitter patter steps so I could climb the stairs and swoop one of them up in my arms, to nuzzle my nose into their neck, giving little kisses, savoring their scent and committing their giggle to a sacred spot in my head. The time goes so fast.

Of all the things Ive seen them through what I cherish most are those little things. Little toes. Little kisses. Little whispers. Squeezing into their little bed to read a bedtime story until those little snores came. Even their little farts that set out those big belly laughs. The way they did that little booty bounce up and down when a song struck them the right way. Painting little fingernails, tying little shoes.

That’s good stuff.


AHA! moment


I had this AHA! moment today that was life-changing. All the hairs on my body stood on end as if I had had an electric current flow through me. Maybe it was more like a fork in the electric socket moment. Whatever. It definitely woke me up. I came to the realization that a large part of the reason my husband and I have been at odds has been because everything is fine. That probably sounds really dumb, but hear me out.

When my husband and I met, I was only recently separated from my EX. I wasn’t looking for love. It started online. We didn’t know each other. We just knew people who knew each other and so it was recommended that we should be friends. At first, I was nothing more than super physically attracted to him. He had that edgy thing going for him. My friend told me that he was nice, funny, but just not for her. So it began. At first we just scoped out each others pages and talked about common interests. After messaging for a couple weeks though he wanted to meet me.

It so happened that this was the point in time when the greatest tragedy I had known would unfold. I picked up the phone one morning to hear my best friend on the other end, but there was no life on the line. Her son had been shot and killed. The world came to a screeching halt. I spent days on end walking with her through the greatest hell a mother can ever know. Sleeping on the floor next to her, sleeping on the couch just to be there when she would wake up crying, realizing that it hadn’t been just a bad dream. I became distant and vague with the new guy, not wanting to share a story that wasn’t mine to share. Until one night on the porch with my friend when she asked me to do her a favor. She asked me to meet him for dinner. She told me life was too short and I had waited to long to be happy. I mustered all the courage I could and obliged.

The favor my friend asked of me was vulnerability. She asked me to put aside EVERYTHING I had just been through in an abusive marriage and take a chance for her that she knew I wouldn’t take on my own. He ended up being the love of my life, but I never would have known that if it had not been for vulnerability and vulnerability, it turns out, is the key to life’s greatest joys and pleasure beyond our comprehension.

I’m of the opinion that because we live in a world where tragedies unfold everyday, we’ve all become desensitized to tragedy without realizing that we are also allowing ourselves to be desensitized to joy. We put up walls, impenetrable perimeters to guard ourselves. We write our safety laws, rules and regulations upon them. DO NOT ENTER. Proceed with caution. Beware of the raving bitch. Do not look at the man behind the curtain.

Back to my husband and I…and the AHA! moment.

Since the dawn of our time together, there have been circumstances and people to deal with. It really is remarkable how many times your heart can be broken without you actually dying. There was so much that made us bleed. We found our way through, however, we had become conditioned to always be prepared for the next obstacle. We knew to turn to each other when it happened, but when nothing happened, we waited for something to happen. In the meantime, we’ve been missing the joy of this beautiful, so precious, life we had made together. Right here, right now.

So I’ve decided I’m submitting myself, to him, to us. Screw hell and high water, come unspeakable joy and overwhelming sunny days, I want it all. I won’t wait for the other shoe to drop. I’m going to throw caution to the wind, be completely vulnerable, make a total ass of myself and I’m going to love every second of it.

As my friend asked of me, I ask of you. Be vulnerable. Be aware of it, respect it, but instead of letting all the “could”s and “should”s stop you, recognize the chance that vulnerability gives you to fully experience life. You cannot know what happiness awaits you until you take the chance, whole heartedly. You’ve waited long enough. It’s never too soon to be happy, my friend.


Pickled, but still damn good.

I have a meeting in a few hours. We’re supposed to be discussing “future planning”. It’s exciting to discuss my son’s future and all at the same time its filling me with anxiety. High school graduation is a mere few months away and after that … the world.

Considering that no one ever thought he could graduate high school, Im elated. He DID IT! He beat the dealer with the cards stacked against him. I can not even find the words to convey how proud I am. Also, I get the added knowledge of having proven someone wrong. So, HA! On the other hand, the hand I keep closed to the world, Im freaking the fuck out. The real world awaits and I have no idea how to properly advocate and navigate for him in it.

I always thought that the hard part raising a child with special needs would be childhood. I dont know why I thought crossing the magical adulthood threshold of eighteen would mean anything more than that. As it turns out, my job in raising is not nearly over. The reality is this: you are never done raising a child, any child. Your job as a parent continues until the day you die and even then your lessons may not fully reach their ultimate teaching value until post mortem.  When you have a special needs child the role is just more hands on and nose in their business.

Because my Pickle has made so mnay strides since making the hard decision to place him in a group home setting with other adolescent males with developmental disabilities, I think our treatment team may have gotten a little ahead of themselves. In early December we were on a graduation, independent living track with parental and county board check and balances in place. Now, I’m finding out that his dream of attending college to pursue an occupation in computer repair could be a reality. HIs extended home visit over the holidays also revealed some major concerns that could never have been caught in the group home setting. With staff scheduled around the clock in a group home setting, there is always someone to close doors when coming and going, make sure foods are properly used and stored, medications are dispensed as prescribed, that money is handled accordingly. Obviously, all these things are available to him here at home as well, but I put more of the responsibility on him, whereas, staff are being paid to do these things as their own responsibilities.

The reality of all this hitting over the holidays while my husband and I were desperately trying not to drown our marriage in bitter waters was a bit much. In the thick of it I didn’t realize that was what was going on, but standing outside of it all now, its plain to see. It hit hard that many of things we’re dealing with now are things we will be dealing with for the rest of our lives. Its overwhelming.

What Im most thankful for is that I wasnt overcome with resentment while having this revelation. I finally feel past the part where I think that this isn’t fair and how nice it must be for my Ex and his ex to be living their lives without worrying about who will look in on their grown child should I land myself in the hospital…again. It just is what it is. I know, everybody knows, no matter what has been said, that Ive stepped in to fill shoes someone carelessly tossed aside and even though, I make mistakes I at least had the kohanas to step up to the plate and take a swing at it.

We may not hit a homerun at every at bat, but we’re doing pretty damn good.