As so often seems to happen, I am at a loss for words. I don’t want to talk about my day because it’s boring. And with all the horrible things happening right now, I need something bright.
So give me something to write about. I need something, an idea, a spark of something, just to help me get going.
P.S – Writers block is now a term I have an entirely new appreciation for.
P.P.S – I am posting this to my FB too so things might get real crazy, real fast.
I need a story to go here.
I need something to take my mind off the pain. Today was treatments and now the side effects are kicking in. In addition, my scar hurts. Not just the scar but the port as well. The whole damn thing hurts. Every time I turn my head the tube moves in my neck and it puts pressure on the swollen scar and feels like it is going to protrude out of my neck. We have put in a call to the pain specialist again. I thought I was set on meds, but I was wrong and then I realized that I was supposed to have an appointment in July that I missed and now I feel like a dumb ass drug seeker because I only call when I am out of pain meds.
I have to explain the drug seeker issue. I AM NOT A DRUG SEEKER! I do not take medication to get high, I take when I need to help with whatever is ailing me. Most of it is so low dose that even if I was trying to “get high” I couldn’t. But because stupid rich kids started raiding their parents drug cabinets and O.D.ing on mommy’s Vicodin or grandmom’s Hydrocodone she takes for her cancer pain, the FDA is cracking down on doctors prescription pads. This would not be a big deal except now, doctors who used to be able to look at something like my scar and say “Yep. I bet that does hurt because I know enough about medicine to know that is Keloid Swelling and that shit is painful. Here is a prescription for low dose oxy.” now send all of their patients to Pain Specialist. But they are now WAY over booked and those of us in pain find ourselves waiting weeks sometimes even months to get the help we need. Then when our pain is unbearable, we find ourselves in ER’s where they can help us until the pain subsides enough for us to be able to walk out but cannot do anything for us long term because they cannot be responsible for a patient they won’t see again. Until, once again, we end up in the ER, because we cannot see our Pain Specialist for another 2 weeks, and the pain is unbearable again. Then we get labeled as drug seekers all because the system is FUCKED! I am very sensitive about the term “drug seeker.” Once I was hospitalized because I was having major pain in my stomach. The ER docs were stumped so they wanted to run more test due to my odd platelet count. I was concerned I was having another PNH flair so I was fine with being admitted. Once I got up stairs I was seen by a doctor who, to make an already long story slightly shorter, told me that he did not know much about PNH but I seemed to be in remission.
No one who has PNH ever experiences remission. We have days when we have more energy and days where our energy level sucks. We are constantly undergoing treatment and transfusions. There are times when our LDH level (I have no idea what that is but I know it is an indicator of a flair up) is whacked and we experience flairs which cause lots of things but one of them, for me at least, is stomach pain. BUT WE ARE NEVER IN REMISSION.
So when I told him that I was still having the stomach pain and that I needed something for the pain while they figured out what the hell was wrong he said something along the lines of your pain is not real, nothing is wrong. Then when I asked to be transferred to the hospital where my specialist was he told me that was the number one sign of a drug seeker and I needed to watch out. I felt like I was being threatened. I was terrified he was going to call the police. I don’t know what would have happened if he did, but I was still scared.
After my second port was placed I was in a ridiculous amount of pain. the bruising stretched across my entire chest and all the way down my right breast. When I asked the people in RI if there was something they could give me for the pain they told me to wait it out. That the pain was normal and that I would be fine in a few days. A few days later, the swelling was worse and the bruising was not going away. I called and begged for a follow up because I was terrified something was wrong. They ignored my calls and finally gave me the line that the doctor who did my surgery does not do follow ups. Once again, I was told to go see a Pain Specialist. I found myself on a 3 week waiting list. Finally my Oncologist, who could tell I was suffering but could not write me anything, called the Pain Specialist and told him there was no way I could wait that long that I needed help now. My Oncologist is kind of a bad ass so I like to think she told him “You will fucking see her! You end her pain or I will end you!” Needless to say, I got the help I needed.
But now there is residual pain. It’s different. It hurts when the weather changes or when I turn my head too fast. Sometimes Eli will just push on it as he wiggles out of my arms and it is all I can do not to drop him. Hopefully this will all be resolved soon and I will have better answers.
Thank you for listening. Thank you for believing me.
Well, I told you today would be interesting, and so far, it has lived up to it’s hype. But not in a good way.
I went to my therapist office only to find out that she was not in today and they had tried to reschedule but somehow I missed the call and the voicemail. The voicemail is probably in my box but I have too much anxiety to answer the phone or listen to voicemail to find out that the person who is going to help me with my anxiety cannot make the appointment. The irony is beautiful.
Then, I misunderstood Noah when he told me my chemo appointment was at 1:40. I was in a meeting and could have stopped at anytime but thinking I had an hour I stayed until 1:00. Well, 40 min was not enough time to get me to my appointment on time. Then we proceeded to fight over who had screwed the other one up and how I cannot keep pushing it off and it resulted in me screaming into the phone “JUST LISTEN TO ME!” which did not go over well. I feel like shit for messing up not one but two appointments today. I feel like shit because I still have not gotten chemo. I feel like shit because Noah and I fought. And I feel like shit because, once again, I feel like my health, both mental and physical are running my life. I just keep snapping a hair band on my wrist and try not to let the inner pain get the best of me because I still have a long day ahead of me.
So how is your day?
It seems like I am constantly on the hunt for new doctors. Not because I want them, but because I need them. I see an Oncologist for my PNH, a pain doctor for the hole the surgeons left in my chest, a psychiatrist who gives me medication for my mental health, but I have recently been looking for the other end of the mental health help which is a therapist. I know I have needed to see one for quite a while. For a while I was seeing someone at the cancer center but all of the conversations were steered more towards my PNH, which is NOT my only problem. She understood and agreed with my diagnosis of Severe Depression and Anxiety but we never got much past how much PNH sucks.
Yes, PNH sucks. It causes lots of problems and what sucks the most is that because it is so rare, no one knows how it actually effects you. My doctors keep telling me “You are writing the book on this.” But like most of you know, I am a shitty writer and the plot twists are really starting to be unbelievable. I need a better plot line. That is for damn sure! Not to mention all the other illnesses that PNH causes, like mental illness. So, now I am seeking a new doctor.
But this is not like all the other doctors. So many have specialties and they are experts in their field. These are the doctors you seek out when you have a rare condition. But with therapists, it’s not that simple. Yes, there is a level of trust that should exist between you and any doctor you see. But seeing a therapist is different. I am going to be trusting her with my life. All of it. Not just the medical end of things, but the emotional as well. I am going to come with issues and I am going to need advice. I have to trust that this person has my best interest at heart and is going to help me the best way they know how. The only difference between this and a friend is the medical end of it.
So, basically I am on Match.com for therapists right now. I have a “date” tomorrow morning. I am trying not to be nervous, but that is like telling me to calm down when I am having a anxiety attack. I keep wondering what we are going to talk about. I know she is there to listen, but will she talk back? I don’t want to have a one sided conversation. Plus, how much does it suck to listen to people whine all day? Maybe I should be her “happy patient” so she can go home feeling like at least one person was not totally miserable. When she asks me how I am feeling, should I extend the same courtesy or is that weird to ask your therapist how THEY are feeling?
I don’t know, but I will find out tomorrow.
At least you know tomorrows post will be interesting.
Tonight’s post will the highlight reel of our trip to the beach. Looking at this makes my heart smile. It makes me happy to know that Noah and I are still best friends. It makes me happy to know that we can make new memories and still be nostalgic for the old. It makes me happy to share the wonderful place that is the beach with Eli. It all makes me happy.
What we saw of the Eclipse
But we were ready!
“I am ready! What is taking you all so long!”
Game night homage to our friend Cole
Noah being a hermit crab on the Put Put range.
I know it is hard to tell, but we did face mask one night. They mostly made our face shiny. Peeling them off was fun!
Garden City venture! I was winning big at the arcade that night!
Yet ANOTHER win for me!
Garden City Pier is the BEST!
Then it rained on us. Not just a little either. So we stopped into the famous Sams for foot long hot dogs!
Random shout out to Jenny Lawson. “Knock Knock Mother Fucker.”
*Noah as not proofed this yet so it may be a little sloppy. Sorry!*
Tonight is the stillest my house has been for as long as I can remember.
My mom is still at the beach, Noah is over at a friends house on a “man-date”, the dogs are still being boarded, and Eli is asleep.
The quiet is nice.
I have always had someone in my house. I have never lived alone. Even when I was living alone, I was too afraid to be alone so I spent a lot of time at friends houses or had people over to my house. Come to think of it, the thought of being alone scared me into making some shady decisions in my younger years. I think it is why I got married the first time. I did not want to be alone. However, now I am learning to cherish the moments of solitude. I recognize that I am not so much alone, but by myself. I still love my family and friends and hold them dear. I get a rush when my house is full of friendly faces. I love hearing people laughing loudly and multiple conversations existing at the same time. I take comfort in that.
But I am learning to take comfort in my alone time, the quiet time. Before, there was this anxiety that existed with being alone. It was like when I would go on vacation and come home more tired than I was when I left. It was my desire to not be alone. My inability to sit still. Now, I seek out the stillness. I enjoyed the beach and the time I spent doing nothing. To be honest, I did get anxious on the last day about not wasting it but, Noah reminded me that we did not need to DO something all the time. Sometimes the thing we should do is rest. And then I promptly went and took a nap. And much like my nap, my time alone is needed.
So now I am going to go enjoy the rest of my time alone. I may read. I may sleep. But whatever I do, I get to do it alone.
I promise this post will not be too long despite the fact that it was 2 days worth of beaching (Not like on a ship but spending 2 days at the beach. I was trying to make a pun on bitching but I did not know beaching was a real word. Learn something new everyday!)
I was feeling slightly gross so I was not in the mood to swim or do much beach related. Mom had offered to take me for a manicure so I took her up on it. I now have beautiful violet nails to help me get in the mood for the next production I am directing. Later that evening we went to California Dreaming which is one of our favorite restaurants at the beach and it was everything we had remembered it to be! That evening was spent playing games and enjoying each others company while listening to the sounds of the ocean pounding on the shore.
Our last REAL day here. I have a big problem letting go of vacations. Especially the beach. So when I woke up this morning there was this sense of dread that we would be spending the day packing and getting ready to go home. This was on top of the fact that I am reaching the end of energy as we get closer to Chemo day.
But the day was not going to slip away from me. It was overcast so there was not a huge crowed at the pool. I took Eli down shortly after lunch and we stayed for a good little while until it was time for him to nap. But that is when I noticed my energy slipping as well. So I lay down for what I thought would be a short nap. 2 hours later, Noah woke me and told me that my mothers friends had arrived and were taking us out to dinner. I pulled myself together, chugged a red bull, and was out the door. Dinner was nice but I was most excited by Noah telling me that he had arranged for us to go to Garden City Pier and Arcade. I was PUMPED.
It was everything I wanted it to be. We went to the arcade where I played the old time baseball machine. If you get 25 points you win a stuffed animal off the wall. Guess who walked a way with a multi-colored stuffed dolphin? THIS GIRL! Not to mention we won enough tickets to get Eli a stuffed Elmo which I know he will love! Then we headed down the Pier to listen to the live band play for a little while. We just sat there, listening and thinking about vacations past. We saw the condo we spit ice out of. (Read Beach Trip Day 1 if you don’t get that reference.) Then it started to rain. So we headed back down the Pier in the windy rain. But it really did not seem to bother us. We were just happy to be together at “our beach”. We stopped at Sam’s Corner and despite the fact we had a very nice dinner, we managed to eat one of their famous hot dogs. We showed up soaked and everyone in there laughed at the two drowned rats that just walked in. But not in a mean way. More like a “most people take off their clothes before they shower” kind of way. It was like running into old friends.
Everything was perfect. It was everything I could have wanted. In 3 hours my beach trip was complete. I could not have asked for a better way to spend my last night at the beach.