Waiting to hear the words, “I’m sorry”

To be honest, I don’t even NEED to hear the words, “I’m sorry”, what I need is for people to stop blaming someone or something else for EVERYTHING!!!

Before I begin “todays story”, let me state that I am currently kind of angry and very disappointed. Even though TECHNICALLY I didn’t do anything wrong, I am still owning some blame for something that never should have happened. I’m not being a dick about it, but I am also not accepting, “well you have to understand”. I don’t have to understand. You fucked up. You should apologize. Seems pretty simple.

Several weeks ago, my mom (who has dementia) was told that she needed to have cataract surgery. Because this is something I have been dealing with for some time now, I have become quite good at taking charge of and handling affairs that she can no longer manage. In this instance, I made the appointment for her surgery. I went over all of her medical information (including the fact that she is extremely anxious and suffers from dementia) with the nurse and pre op people. I made sure everything was prepaid. I made sure they had a copy of her power of attorney. I made sure that her prescriptions were filled and my father would oversee their use. I reiterated numerous times that they would need to allow my father to stay with her until she went to the operating room. I was assured that there would not be a problem with this….. Until there was.

A week before surgery, while I was in Colorado. I received a call saying that because of an outbreak of Covid at the surgery center, they would be shutting down for two weeks. “Okay, no problem”, I said. Who was I going to be mad at? Shit happens right? Two weeks go by, and I have to go through all of the preop information again. Also not a problem. I remind them that my father will need to stay with my mom up until the last possible moment. “That won’t be a problem”, we have it notated in her chart. After hanging up with the surgery center, I sat down with both my parents to go over the new information. I reminded them that because of Covid, they might say that my father couldn’t come in. He would just need to tell them to review her chart because they were making an exception for them.

My Mom’s surgery was scheduled for 8 am yesterday. At 10:34, I got a tearful call from my mother yelling, “they wouldn’t let dad go in with me!!! They messed up the surgery!! It hurt so bad I was screaming so they had to stop!”…etc etc etc

Good thing there wouldn’t be a problem huh?

After “talking my parents down”, I called the surgery center and politely asked to speak to “whoever was in charge of listening to complaints”. I briefly explained that my mother had a bad experience and I wanted to talk to someone who could give me more information. I was transferred to the “Director of blah blah blah’s voicemail”. My message was worded something like this… “Hello I’m Grace, my mother (her name) had surgery at 8 am this morning. I just received a very panicked phone call from my mother stating that something had gone wrong during surgery and they wouldn’t let my father in or explain anything to him even though I was assured this would not be an issue. Can you please review any case notes you have and call me back?”

To her credit “director girl” did call me back that afternoon. BUT the first words out of her mouth were, “I can only discuss limited and general information with you because of the HIPAA laws”. I responded, “I am not calling to yell and scream. I am calling because my mother is very upset and I would like to know if you can provide any insight into what happened there today so I know how to proceed.”

As I waited for her response, I thought to myself “Don’t say hippa, don’t say hippa”…. Guess What …..she said HIPPA. (SMDH)

In case you aren’t aware of what Hippa laws are, here is a brief definition : The Health Insurance Portability and Accountability Act of 1996 (HIPAA) is a federal law that required the creation of national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge.

DEEP BREATH

I interrupted her spiel to say,

“I need you to listen to me”. shut the fuck up and stop hiding behind hippa

“I have medical power of attorney over my mother that overrides Hippa” which you would know if you actually read the case notes before calling me In fact, not one person in your office has ever spoken with my mother about her surgery, all communication has been through me. The reason for this is because she has Dementia. Because she has dementia she needed to have my father with her to assure her that what was happening was ok. If you read your fucking notes you would see that! I was assured numerous times before her surgery that this would NOT BE AN ISSUE! More importantly though, I need to know if something went wrong during surgery.

She responded, “I’m going to have to check her records to find the power of attorney, will you hold?”

“Sure not a problem” you fucking moron

When she came back to the call she said, “Ok I found the power of attorney and I see the notes that your father needed to accompany your mother”.

OK and someone fucked up right?!?!?

Can you tell me if something went wrong during the surgery? Why was she in pain?

A whole bunch of big scientificy words came out of her mouth. (to be fair, I guess I did ask for that.) But what I also heard were more excuses….

“NORMALLY this portion is not painful” “Yes she was quite upset” “She had to be sedated, but then everything was fine.” “Because of covid, we don’t let patients bring anyone in with them unless it’s medically necessary” “Your father didn’t argue”

FINE?!?!?!? You not only sedated my mother without her consent, but you didn’t tell my father that she had to be sedated?!?! something he might want to fucking know since he would be taking care of her!!!!!!!!

“So what you’re saying is the surgery was a success and there were no complications?”, I asked.

YES. Someone from post op will be calling her tomorrow to discuss that.

Wow! Just wow!

My thoughts……

Good luck with that you fucking idiot. I already told you all of the information you have for her is mine. When you call her, you will get me. You guys fucked up on so many levels, and now you want to blame covid and tell me everything was a success?!?!? What are you going to do to make sure this never happens again. Why haven’t you apologized?!?!

What came out of my mouth

I understand that Covid has made things very difficult for everyone. I would not want the stress of your job for anything. Although it may not make sense to you, when they call to talk to my mother tomorrow, I am going to need them to apologize to her for not allowing my father to be with her. They will also need to reassure her that she will recover completely from the surgery. Now because you only have my phone number and I want to make sure this happens, I also need to know when to expect this phone call so that I am with my mom when it comes in. Can you give me an approximate time?

I am aware that an apology won’t undo what happened, but neither will excuses. I thought I had done everything that was necessary to make this as smooth as possible. Apparently, I should have gone with her. That’s on me. I will know better for next time. I apologized to my mom for not being there, and have tried to assure her that everything will be ok.

The surgery center is supposed to call at 10:15 central time today.

Living with Interstim 3 months post op

Back in August of this year, I had the Interstim bladder stimulator placement surgery. In September, I wrote about my journey with Bladder Incontinence in a post called, Being a Human Guinea Pig. A few days later, I wrote a sarcastic, yet honest post about what I was going through mentally after having the surgery. At the end of that post, How did your Interstim implant surgery go, I said that the device was already in my body, so I should at least give it the benefit of the doubt. I have, and I would like to share.

Did the Interstim Device “fix” me?

NO

Did it help reduce my symptoms more than 50%?

Absolutely!

Do I regret having the procedure?

No

Would I recommend the Interstim device to someone suffering from Incontinence?

Honestly, I don’t know. ( Not very helpful am I?)

Maybe this will help

On a day to day basis, I don’t even realize that I have the implant anymore. By this I mean, I don’t really notice it unless I am looking for it. I don’t feel any pain at the incision site while I am sitting, driving, walking, bending over, etc. I use a leg press machine for physical therapy and have not had any issues with that amount of pressure against my back side either. I have to admit that I do miss the “ass pats” (spankings?) that Einstein used to loving provide, but to be honest we are both a little nervous about that experiment.

I did not die in the MRI

I was very anxious about having my quarterly MRI last month, (another story for another time) but after finding a location that had the equipment and experience to perform MRI’s on patients with implanted devices, my anxiety about my body being ripped apart while in the tube has been relieved. As a bonus, the pictures from the MRI model that they have to use are 1000x better than any of my previous 100 scans!!!

Going through Airport Security with an implant

I am pleased to report that I also did not die while going through airport security at O’hare or Denver airports. (I did this two times just to be sure.) Medtronic supplies you with a card stating that you have an implanted device and can not go through the metal or magnetic detector. You can also always ask to have a pat down from TSA, but I had no trouble standing in the usual “stand still here and put your arms above your head” scanner.

Other horrible things that did not happen

The above list had me terrified, but to date I have done the following and have had no issues:

  1. Driven a car without turning it off
  2. Operated power tools including a drill and a saw while standing on an aluminum ladder
  3. I carry my cell phone in my back pocket (over the device) for 90% of my waking hours
  4. Operated all household appliances including the washer, dryer, dishwasher, microwave, vacuum cleaner, freezer, computer, television, security system etc
  5. I have been to the dentist with my 2 year old grandsons, not as a patient

What HAS happened after having the device implanted?

Most of the time, I am able to hold 400-500 ccs of urine before leaking. (pre interstim and without Botox surgery, the number was closer to 150 ccs) I still have to use a catheter to empty my bladder completely, but am actually able to “pee a little” on my own (if that’s a thing). *Drinking Alcohol changes those numbers. Beer seems to run right through me. The carbonated or hard selzer drinks ( Vizzy, white claw, corona) seem to move a little slower, but still increase frequency and decrease retention.

The only other change

I have to “recharge” the device once a week.

As you can see, the recharger is about the size of my hand. Also in the picture is an elastic belt that you can put the charger in to wear while you are moving around. The Medtronic website shows a woman gardening while wearing her belt. Yay her! (This doesn’t work for me.) I have found that I have the best results and shortest charging time, if I sit at the computer, put the device under my underwear and don’t move for a half hour or so. For some reason, when I am re-charging, my right foot (the one that has that all the titanium in it gets very warm)

While uncomfortable, its not incredibly painful. Maybe it’s a coincidence? Maybe that is where the nerve that is being stimulated ends? I’m not sure. I could also turn down the charging speed, but it takes twice as long to charge and sitting still IS difficult for me.

If you are reading this because you or someone you care about it considering getting the Interstim, I wish you the best of luck. Only you can decide if it’s right for you. DO YOUR RESEARCH!

“I’m not ready to lose you!”

It seems like this entire year I have been really struggling with death or maybe fear of death? I’m not really sure. The strange thing is I’m not talking about my death. I’m actually not even a little afraid of that. (This is not to say I’m not afraid of pain, because I am) I’m just not worried about dying. So what is this obsession I am having?!?!!?!?

Earlier this month I wrote about parenting my parents. In the last few months, I’ve taken over medical power of attorney’s for them both. We are in the process of doing financial poa’s as well. I’m sure that is part of it. Yesterday, I was at my parents helping my dad move these incredibly heavy logs onto his wood- splitter. Out of nowhere I yell, “I’m not ready to lose you!!!!”, and began bawling!!!!!! (I’m surprised my outburst didn’t cause him to have a heart attack.)

He stopped working and immediately put his arms around me. I don’t even know how long we stood there while I just cried. Eventually, I wiped the frozen snot and tears off my face and said, “Ok I’m ready to get back to work.” and we did.

Are the words “White privilege” offensive?

The other day, I shared the following meme on Einstein’s facebook page.

Yesterday morning a friend commented on that post, “If the Supreme Court of the United States never had to determine if you have the same rights as every one else, you have white privilege”. My first thought was…..”where is the logic in that?” What about woman’s rights, suffrage etc? One does NOT equal the other!!!

I responded, “I disagree. Woman’s right’s? so I am not only not white privileged, I am testicularly challenged?”

My friend responded, ” Yes, but have you ever had to go to court to ride the bus, eat at the lunch counter, go to the school closest to you, live in the neighborhood you wanted to, be passed over for promotion or a job, get less pay than a coworker that did the same job, marry a person you wanted to? I have a cousin who’s father was half native american. Her mother and grandmother went shopping one day and took her with them. At noon they stopped at a restaurant on the way home. They were refused service because they thought her skin was too dark.”

GRRRRR! I am aware that things like that happen, but NOT on my watch!!! I have never treated someone differently because of their race or skin color. I have also never sat by and watched something like that happen.

I responded to his comment with, “I am not disputing that discrimination’s is DISGUSTING. I am disputing being told that I have a certain privilege because of the color of my skin. The entire argument is about HUMAN right’s no? Then why not focus on the fact that we are all human instead of pointing out differences in skin color, religion, hair color etc? I’m just saying that ‘picking a fight’ with someone telling them they are privileged is not the way to get their support is it?”

Our conversation pretty much ‘ended’ there. He went on to say that things won’t change unless the ones with the power admit there is a problem. I agree. But that still doesn’t mean that many people, including me, aren’t bothered or offended by the term “White privilege”.

I’m trying not to be bothered by it, (sticks and stones and all) but I am. Maybe I don’t understand the definition of privilege? I spent a good portion of the day yesterday (off and on) googling privilege. The first definition I found was “a special right, advantage, or immunity granted or available only to a particular person or group.”

The next search showed:

  1. a right, immunity, or benefit enjoyed by a particular person or a restricted group of people beyond the advantages of most:the privileges of the very rich.
  2. the unearned and mostly unacknowledged societal advantage that a restricted group of people has over another group:white privilege based on skin color; male privilege; children of privilege.

While I still don’t like the term White privilege, I will say that for all of the reasons I have been discriminated against (weight, hair color, sex, tattoos, single parent, being agnostic, etc) I don’t believe that I have ever been singled out because of my race. Does that mean I don’t understand and disagree with discrimination? I don’t think so. 😦

Parenting your parents

Do you remember when you were a child and could not wait to grow up or get older? Be honest, I think everyone felt that at one point. Then almost overnight, you became an adult. I know that it doesn’t feel like that when you are going through your pre 18 years, but when you are in your 40’s looking back at the things you’ve done in your life, it sure seems like it’s gone pretty quickly. I graduated high school, had and raised children. ( I’m even a grandma now) I’ve been married …..and divorced. Bought and sold a car (or two)…hell bought and sold a house or two. I’ve traveled to far away places, jumped out of a perfectly good airplane….The list goes on and on.

I have also lost many people that I’ve cared about. I’ve held and comforted people while they were suffering, and tried to help them up after their loss.

My point is that I feel like I have done MOST of the things that adults are expected to do. Don’t get me wrong, I am sure I still have a lot to do with my time on Earth. I think my ‘confusion’ or quandary is that I never thought that one day I would be ‘parenting my parents.’

During the last couple of years, more and more frequently both of my parents have begun to rely on me. ….ALOT (Sometimes I feel like I’m being given chores AGAIN) Sometimes I think, OH My GOD you’ve got to be kidding me?!?!?! and then OTHER times ( like when I go to yet another classmate’s parents funeral ) I realize I would move heaven and earth to keep them around as long as possible.

I saw a meme or something on facebook one day that said, “when you lose your parents, you are an orphan. When you lose your spouse you are a widow. When you lose a child there is no word for it, just like there are no words to describe the pain.” I also don’t believe there is a word for the child that parents their parents. I wasn’t “in a hurry” to get to THIS part of life.

My mother has Dementia/ Alzheimer’s.

About a year ago, my father was told that he was going blind.

I am in a “new” phase of my life, that I was not prepared for.