I think if I were a reader of this blog, I would start to wonder: Is this stuff really happening to this woman? This woman has got to be getting this life out of a book or just has SOME imagination!
I know I would be wondering.
Anyway, on Saturday I took Tyler to a birthday party. The kind where there is some huge structure and you let your child loose and you see him sometimes when he says, “Mommy, I am having so much fun!”
We were late to the party and as I was driving I realized that I had forgotten to bring any pain medication for breakthrough pain. Oh well, I thought, I can make it through an hour and a half party.
Lately my Lupus has been raging out of control. For those who do not know what that means, I run a fever every day, I am having to wrap up my wrists and knees to stabilize them, otherwise I cannot walk and cannot use my hands. I am on huge amounts of painkillers which I will not name here. Sometimes, the pain “breaks through”. I am nauseous every day. With the fever comes a headache, of course. My feet, ankles, knees, wrists and hands are swollen. I have mouth sores and my tongue is often painful and swollen, and my throat hurts. Yes, I am WAAAYYY below my usual level of crap.
Usually between my mania and painkillers I could make it through such a party. But there was a “fly in the ointment” so to speak, or should I say a Spider. Yes, Spider-Man came from New York City to Central New Jersey! Actually, he was damn good imitation. I am gabbing with mothers and fathers while the children are on a scavenger hunt with Spider-Man and a child screams, and unfortunately it is mine. I look and, this was so surreal, Spider-Man is cradling my child in his arms, comforting my crying kid. I hand another mother my coffee and cell phone and run over to Spider-Man and Tyler. Tyler’s tears are all over Spider-Man’s costume. He had fallen and hit his head. I wasn’t really scared but Tyler was asking for an ice pack.
And then, I think this is where I made my BIG mistake, I TOOK Tyler from Spider-Man. I CARRIED my 38 pound kid over to a couch and comforted him. One of the staff was right on the case with a…Spider-Man ice pack!! By this time Tyler is ready to go, I use the Spider-Man ice pack for myself.
The party ends. I have a gift for one of my friends who has just had a baby. We are the last two in the whole lot, it is a hundred degrees. I am not even kidding you, she is telling me that I should be more positive about my diseases, and live and enjoy for Tyler. But at the party she told me that I pay way too much attention to Tyler. Oh, I love her anyway! I understand at this point in my life that she does not grasp the severity of my illnesses, even though at Christmas-time her husband had…a brief stint with thyroid cancer, it was over and done with in a few months and they resumed their glorious lives.
Suddenly I scream. “What is the matter?”, she asks. “I just got some bad pain in my right arm.” The pain is sudden and shocking, it just comes out of the blue and it is a 10 on the pain scale. “You’re bleeding!”, she then says in horror. This has been another one of my symptoms that I believe is related to my Lupus. I will be absent-mindedly scratching an old mosquito bite and blood just starts pouring out of it. Ever since I have had Lupus I have been very slow to clot, but this has been out of control. My friend, mom that she is, helps me stop the bleeding with a wet wipe and tissues and she goes on her way.
Tyler and I are all alone. I am just driving in the parking lot, when the pain hits again in my right arm so badly that I need to pull over. It is excruciating, it is unpredictable. It cannot be safe to drive with pain like this. I call Grant, FOUR times. So much for having his cell phone by him at all times. “I want to kill your father”, I tell Tyler. “Is that just an expression, Mommy?” “Yes, baby that’s just an expression.” I have no other recourse than to call 9-1-1. I am TEN minutes from my home but this pain is too dangerous. I am kicking myself for not remembering my pain meds.
It is difficult explaining my situation to 9-1-1. Tyler is calm until the ambulance comes. I step out to flag them down and they immediately grab me. “My son! My son!” “Ma’am, we need to get you out of this heat immediately!” They are dragging me. “My son is in the car!” I scream. One of them gets Tyler and they give him a yellow stuffed bear that they keep for children on such an occasion. Tyler is howling because he wants his goodies from the party which the EMTs are kind enough to get for him. I tell him he can have any candy he wants, that he is being such a good boy.
I request to be driven home. If I can take another pain pill and get some rest, I feel sure I can get hold of this pain. Tyler is now very excited about driving in an ambulance. One of the other EMTs drives my car home.
Can I tell you how hard it is to pretend that we are having a fun adventure for Tyler’s sake? The emotional toll it took on me not being allowed to cry and scream in pain?
We made it home and Grant was so sorry that he actually let me talk about every single thing that happened since I had left for the party, a great sacrifice on his part, listening to my chatter, and well he should be tortured.
You may now be asking yourself, “Well this woman has written over a thousand words as it stands…when does she then get to calling 9-1-1 again?”
When we all settled in to calm down and watch some t.v., I took some sedatives in hopes that this would help in conjunction with my pain meds. It didn’t. I am popping my lower dose pain meds like Pez when I realize, Just because I am not getting pain relief does not mean I am not heading towards a possible overdose. You can’t keep popping pills just because they are not working.
I called my pharmacist and told her I was very sleepy and she told me that I can take a nap, but that Grant needs to check on me every so often so to make sure I have not become unconscious! Then she said, “I think you should go to the E.R.”
I too was convinced and very frightened. I am by now very used to packing for the E.R.; a good book, a magazine, my iPhone with headphones and then I call 9-1-1. Tyler had also given me his little ambulance bear so I wouldn’t be scared, my sweet little boy.
Nobody would let me sleep until I was evaluated by the doctor. Luckily there were not too many people in the E.R., amazing for a Saturday on a day with unhealthy air qualities. I had to tell my story to at least four different people. By the time the doctor comes in and asked me what is going on I said,”Well, did you read my chart?” “No.” Not the best bed-side manner. So I tell him.
“So, you want to know if you are having an overdose?” “Well, yes, or am I heading towards one?” “The answer is no. So, I will talk with the nurse to release you, do you have a ride home?”
“Well wait, I am here, why don’t you treat my pain?” And he looked at me and he said possibly one of the most scariest things I have ever heard.
“I have nothing to give you.”
I was in shock. I am in a hospital and my pain is so bad, so beyond anyone’s capabilities in the E.R. that I cannot be treated!
“Ms. Cullen”, he continued. I just starred blankly at him. “Do you have a Pain Specialist or Anesthesiologist?” “Not yet, my life has been too crazy to seek one out.” “Well, I suggest you make that your TOP priority. Good luck.”
And then he was gone. Now they let me go to sleep and I slept the sleep of a person who has been through a serious physical and emotional shock. Due to the amount of medicine I had taken, they insisted on me staying in a wheelchair until Grant and Tyler were able to pick me up.
On Monday, I have an emergency appointment with my Rheumatologist. For the first time in a long time, I am very scared as to what may be coming next for me.