1/15/16

An Evening Chat

 Things are not going as well as I had hoped for today. Jamey has been in bed all day. He just wants to sleep. It could be the weather messing with his pain. It could be the new medication. It could be something going on with his liver. It could be the stress of the past few days. I know myself, I'm dealing with a hellish headache. I assume from barely any sleep. It will be an early night tonight. The last of the big time partiers, to bed early on a Friday night to actually sleep.

Theres a few things I have to do before bed though. A shower is most definitely one on that list. Between trying to get some sleep today (and failing) and worrying about Mom yesterday, I just haven't had time to get one yet today. When there was time, there was someone in the bathroom.




Dad is once again believing every word from Mom. I'm not saying my Mom is a liar. I am saying that my mom doesn't actually remember things that are going on. She either lost or threw away his insurance card, which I now have to find and fix with the pharmacy and the doctors office.  She said the doctor that she's thinking of going to in February put DNR on her chart. Mom is a full code and it would be illegal for a doctor to do that. I'm not one to trust the medical profession 100%, but I do know that no doctor is going to risk his license for something that stupid. Could he have done it on mistake? That's a possibility, but not the way Mom's going on about it. And the mistake was corrected and shes still here. Honestly, if Dad would stop to think, he would realise that as well.





Oh well, theres a shower head calling my name. I think a nice hot shower and a good nights sleep is just what is needed here. Hopefully my crew goes along with it.













Let's Chat about Chronic Pain Patients and Discrimination

 When I say discrimination, I'm not only talking about the discrimination that Chronic Pain Patients face in society, but also what they face within the medical community.  From hospitals, to emergency rooms to pharmacies at one time or another, a chronic pain patient is going to feel the sting.  It's something I know all too well and I'm NOT a chronic pain patient. I deal with two every day. My Mother and my son.

The latest in point: my mother is currently in the hospital. Mom was hurt when I was a teenager on the job. As a nurses aid, a patient twisted her arm two different ways, in order to get away without hurting the patient, she twisted it a third resulting in permanent Ulnar Nerve damage in her left arm. Her main arm. She's had multiple surgeries on the nerve from scar tissue to moving it into a fatty deposit on the other side. It's been thirty years. In those thirty years, never once has she abused her pain medications. She's never taken more than prescribed although I have watched her in tears with the pain, she has never "lost" a prescription. She has never gone to other emergency rooms looking for more medication.

Last month, right before Christmas, her doctor caved to pressure from the insurance company and dropped her due to being readmitted to the hospital multiple times. On top of chronic pain, Mom also has COPD, Congestive Heart Failure (CHF), is prone to cellulitis in her legs from the swelling of CHF and a list as long as my arm of other issues. She's in the hospital a lot. She was asked today, by a doctor in the hospital she always goes to, if she was dropped for abusing her medications. Yes she's on a high dose of narcotic medication, it was prescribed by the doctor who dropped her. If Mom was a drug seeker, it would be in her chart. She has home health nurses coming in about twice a week. If they thought she was abusing her meds, they would do a pill count at every visit. They could have if they so chose to. There was never an issue. But instead of calling the doctor to find out the reason, the doctor caring for mom immediately leaped to medication abuse.



Shortly after Jamey turned eighteen, he was suffering from a major pain flair which caused the pain clinic to raise his dosage three times in a month. For some reason, the pain clinic never contacted the pharmacy about the change and since his medication is compounded, it was taking some time to make as well as insurance issues with the new dosage (preauthorization) He was going to run out. Our regular doctor was out of town, the two nurse practitioners do not have admission authority and  since the on call doctor did not agree with the pain protocol Jamey is on,  She would do nothing. I took him to the ER. Without even reading his chart, the emergency room doctor flat out told me that they would not give him his prescribed medication that he had gotten there several times by IV (and we were requesting admission for IV infusion) In fact, they told us that the hospital did not do IV transfusions of the medication.

Let's just say, I rose a bit of a stink that night. First off, the doctor admitted to just scanning his chart. If he had read his chart, he would have learned that Jamey is a liver patient (before cirrhosis was diagnosed) We were told to give him tylenol which is against his doctors orders because tylenol is liver toxic. When I brought that to his attention, he said to give him ibuprofen which is an NSAID. Jamey was already on an NSAID through rheumatology. It could have caused bleeding and stomach issues. It ended in a shouting match in the waiting room of Children's hospital where I told them that I would be back with a lawyer and the media (didn't happen, I was just really really angry after watching my child walk out of the ER in tears from the pain.) I wonder how many other families have been treated the same way? It was horrible. He spent the next four days in bed until we could get the new dosage of his medication.

And now, even when I take my youngest son in, they make sure to let me know that they have fully read their charts.


I have been blessed not to run into the biggest discrimination at pharmacies where they will refuse to fill a chronic pain patients prescriptions. I came close with his newest medication, the tech was a bit snooty until I told her that it was used for chronic pain, head aches, to increase the appetites in end stage patients, and for nausea associated with chemotherapy. Fortunately for her, her attitude changed, because I would have had no issue at all going to the manager of the store as well as to the head pharmacist.


Things people have told my mom or my son:

  1. It can't hurt THAT bad. (yes it can.)
  2. If you can do XYZ, why can't you do ABC? (Physical limitations. XYZ may be distraction techniques TAUGHT to the patient to deal, and yes some days or even some times of the days are better than others.) 
  3. You aren't handicapped. (If your doctor says you are handicapped, you are handicapped. It's not for you or I to decide.) 
  4. Push through the pain. (one of my favorites. Would you ask someone with a broken leg to walk on it? ) 
  5. He's/She's faking. (how in the world would you know that? Ask to see the medical records. They don't lie.) 
  6. Pain is weakness leaving the body (written on t shirts for the football team during Big Dog Bootcamp his junior year. After his gallbladder surgery. During his first pseudotumor cerebri diagnosis. My son is the strongest person I know.)
We don't ask people with cancer if they are faking. We don't expect someone with a torn ACL or other ligament to be back to normal activities before being released from a doctor. If we see a cast, we don't expect the person with a broken limb to be using it. But since pain is invisible and extremely variable, we expect far more from Chronic Pain Patients than they can give. And it's causing major issues. Depression, anxiety, suicide. The feeling of being worthless because if it's chronic, it's not going away anytime soon, if ever. It's a new way of life and for many it's hell on Earth. 


There are millions of chronic pain patients in the world today. Are you one? Have you seen discrimination first hand and would like to share? Is someone you love suffering every day? 

Five Minute Friday~ Time


Time can mean a variety of things to everyone. For me, there's just never enough.  Between two kids, a husband, my parents. It just seems everyone else gets put first. I want time with my friends. I miss them desperately. But even with Mom is the hospital, time is short. There's always the boys. I do get time once Dad leaves or while he's asleep, but it goes so fast between phone calls and house work. I need to make time to start growing this blog. I want to use this to raise awareness for Liver Disease , CRPS, and the many trails and issues with American healthcare. I will do it. this year. If I can help one other family, it will be time well used. And I will be helping myself in the process. I hold all these thoughts inside. It's not always a good thing. 


So what does "time" mean for you? 

A Friday Chat

I had to cut yesterdays chat fairly short. There were some issues with Mother. I'm still ticked off about a lot of it, so I won't go into it here. I do want to keep things fairly positive.

Jamey started a new medication last night. Bah bah Bahm: It numbed part of his head. Numbed is kinda good because numb doesn't hurt as much. He's had a headache since his last trigger point injection over a year ago. He stopped them because the rebound headaches from them were hideous. Numb is very very good. I'm waiting to see if it's more effective today or not. If so, I will call the pain clinic and let them know. And then next week, he has another medication to start that will require blood work every two weeks. A small price to pay if it works.



I plan on getting Jim and Ed to help take down the Christmas tree tonight. Yes, I am one of those lazy witches who still have it up. In my defense, it's been a bad month for my knees and I did something to my right arm. I can barely pick up a coffee cup without pain most of the time. I'm trying to give it time to heal, but that hasn't been possible. Laundry is torture. I'm one of those right handed people who is almost worthless with my left hand.


I'm not too sure how much longer I have on here. From the sounds of it, my Dad's up and Mom is in the hospital right now. He needs to take her some clothes and some snacks because the doctors look at her chart and automatically order a diabetic diet while shes on steroids. That doesn't work. Especially since the woman is so freaking picky that she barely eats anything. I keep looking around here and seeing everything I could be trying to get done while shes in the hospital. I will probably be putting some guys to work this weekend. Downstairs will take me no time at all outside of the 80 billion plants that need watered. Jamey's room and the attic (as well as Christmas decorations) are the priorities right now.



So, what are your weekend plans?

1/14/16

OK I didn't mean to disappear completely


Things have been hectic and lets face it, I haven't been in the best of moods. I could pretend that I wrote all my blog prompts like a good little girl, or I can be real and admit that I live in the real world dealing with very scary things. Sometimes my priorities have to be my family. 


Just to update:

  1. It looks like Mom will be enrolled in LIFE of Armstrong County on the first of February. It will give her a doctor since her's bailed on her after 20 some years right before Christmas. And the additional benefits will give her a much better quality of life. She'll be getting out of the house weekly (a few times a week) and going to a community center that will allow her to interact with other people. It will get Food Network off the TV 24/7 here at home. They'll help if something happens with Jamey so shes not left to her own devices until Dad drags himself out of bed every day. 
  2. It looks like we might be dealing with Pseudotumor Cerebri with Jamey. His PCP has referred us to neurology on top of the headache clinic. It also looks like the previous one (that someone said he didn't have) caused some permanent damage to his optic nerves. Thank goodness not bad enough to blind him, but enough that I'm concerned about waiting a full month to get him into Neurology. 
  3. He'll be starting two new medications with in the next week that I have debated over with his doctors for quite sometime. One will have him getting bimonthly liver enzyme blood work. He'll start one tonight. The benefits of it right now would be increased appetite (he's eating hardly anything) and it could control the headache and his nausea. The other, we'll wait a week to start. 
  4. We're down to only one more appointment this month. Possibly. It is only the 14th. We never know whats going to pop up. 


1/6/16

Alone time

I personally feel alone time is important. It gives me a chance to unwind and relax. Time to cry over silly videos, or play FarmTown. I also find that if I don't get it, I can be quite the bear.

I try to relax before I go to bed every night, or if I get sometime in the morning before Mom wakes up. And if she gets into this new program, I'm actually going to get a bit of time for myself during the day. I love mornings where I can relax with my coffee and go through FaceBook (or Twitter). It doesn't happen as often as I need it to.

Before the boys were born, I would take long hot bubble baths with a good book, usually while Jim was off fishing. That of course was before the internet, before chat rooms and message boards and social media. Way before I could leave a review on Amazon. The advances that have been made aren't always for the best when one can't prioritize.


Today I can go to FlyLady.com and read about how to organize my life as a flybaby while ignoring the housework that needs to be done. I can go to Pinterest and pin organizational ideas, recipes I may or not make, fruity drinks to relax that I know I won't taste. I can join message boards and groups to complain about the lack of help I get from my family and get tips I won't use to try to force them. And I can come here and blog about everything I'm not doing.

I can search movie reviews for shows I won't see. I can throw my two cents into the ring of a political debate. I can find out how my third cousin twice removed is recovering from her wart surgery. All while sitting at the table sipping my chocolate caramel columbine brew.

Honestly, I don't know what I would do without the internet today. I can check my bank account, pay my bills, keep in touch with friends and family, read the news, watch my favorite shows, and have my son message me from upstairs for his medication. I can make appointments, order ferret food, shop for shoes, and tell Jim to stop for bread. It's become a huge part of every day life.

I know there's a trend to "unplug". But I use it so often for different things going on with Jamey that for me honestly, it would be better if I could find the balance between obsession and it being a basic tool of life. I don't have a phone book, I google places. I don't have reference books for medications (and they change so often!) so it's google again. If I forget to mail a payment, I jump on the website. If I can't remember an appointment, I jump on his UPMC Portal.


How do you balance things out? What's your favorite thing to do to unwind?

1/5/16

I'm going to be naughty

 Today's writing prompt was to take the first sentence from my favorite book and make it about my life. Well, I read to escape my life, unless of course, it's something to do with on of Jamey's illnesses. I'm just not doing it. So, I'm going to wing a post on whatever and be completely totally random. I do random well. Sometimes way too well.

I'm fairly certain that throughout this idea, there will be more posts that I just can't fit in with my life and my style. I've found, that quite often in life, it's not always easy for us to fit into the same mold. And that's perfectly OK. If we were meant to, life would be very boring. I love the variety of people in my life. We're all good people, but our differences are what makes us who we really are. It keeps life interesting.


  1. I'm trying to figure out how to get out of cooking tonight. Jamey has to be in Pittsburgh and Mom should be home soon. I just don't feel like cooking. 
  2. I really should have taken a nap. 
  3. What the heck am I going to watch until my shows come back from winter break? I just finished watching the series Dexter for the fourth time. I'm out of ideas. I've seen Charmed three or four times as well and Buffy the Vampire Slayer gets annoying while shes in high school. 



What do you like to read? How do you find time?

@TerrorMom

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I guess I'm actually supposed to fill this out. I'm a passionate medical mom of a 19 year old liver/CRPS patient. My goal with my blog is to raise awareness for his conditions. And to hash out my feelings about it. There are a lot of raw emotions when your life is suddenly stalled by any illness, let alone your child's illness. 

I'm also attempting to either "find myself" or "remake myself". So much of my time and energy goes into caring for both my mother (end stage COPD) and son, along with trying to be Mom to my younger son and a wife, that most of the time I feel lost. I tend to put myself on a back burner and right now I'm burning out. 
 

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