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.

Isn’t it Ironic?….smh

Have you ever heard of the Link or EBT card or food stamps? Usually people receiving government benefits such as these have some kind of disadvantage that prevents them from earning enough money to live on. Examples might include a mental or physical disability. Lack of childcare etc. So why are the benefits so hard to use?

I’m not sure if I ever stated that I was on Social Security Disability before. (very limited income) This year with the increase in my medical expenses, I have qualified to not only receive financial assistance to help with those bills, but also have qualified for the link card.

Last weekend, I tried to complete an online order at Sam’s club as I have frequently done in the past. Pre-covid, the system was called Click and pull. The process was usually fairly easy and straightforward. You selected the items you wanted by placing them in your cart, and when finished you would select the date and time you would be picking up your items. When you arrived at the store, you would go to a special “click and pull” desk with your list, or confirmation code and your payment. Someone would then bring all of the items to the front of the store for you, and even help load your car. Win win right?

Why not THIS time?

I went online, selected my items and was directed to a new area called, “curbside pickup”. Okay. no biggie right? Well apparently it is a big deal. You must pay for your order before the club will pull it. OK, I get that, but WHY DON’T they take link online?!?!?!? If I need to use the link card I have to shop for myself, which kind of defeats the advantage of online shopping doesn’t it?

I even called the store to explain my problem and asked if I could pay for my groceries with my credit card, but switch the payment types at customer service when I picked up the food…… NOPE! As a side note, a good portion of the items I tried to purchase where eligible for FREE SHIPPING, but you also can not use the link card for shipped items?!?!?

Everywhere in the US is still encouraging social distancing. People that are immuno-compromised are supposed to avoid others even more. So WHY do I have to go in the store?

Am I the only one who sees the irony of this?

I feel like the system is designed “to keep a man down” more than to help them.

How did your Interstim implant surgery go?

GRACE : I can’t tell you.

Wonderful friends: What do you mean you can’t tell me? Weren’t you there?

GRACE : Yes.

Wonderful friends: Have you noticed any difference?

GRACE : Yes, my back hurts and I am supposed to do nothing for the next two weeks.

Wonderful friends: What do you mean nothing?

GRACE : I don’t know the drug rep said don’t bend, twist, or lift anything over 10 lbs, no driving, no sex, don’t touch it….. So basically nothing!

Wonderful friends: Well what do you expect, you just had surgery?

GRACE : Yeah yeah, I’m gonna go do nothing…Thank you for asking, ttyl

Two days later

Wonderful friends: Are you feeling better today?

GRACE : What do you mean? It doesn’t hurt as much, but I can’t really do anything so I’ve been kind of grumpy.

Wonderful friends: Do you notice any difference with your symptoms?

GRACE : Nope! I don’t feel anything. I’m still waking up soaked. I don’t know if the device is on or what it is supposed to be doing. The doctor hasn’t even called me back to tell me if I can take a damn shower….grrrrr

Wonderful friends: When do you see the doctor again?

GRACE : TWO WEEKS!!!!! I’m gonna go, they sent me home with all these books to read and I should probably get started on that.

An hour later

GRACE : Incoherent mumbling

Wonderful friends: Why are you crying, did you try to do something you weren’t supposed to?

GRACE : BECAUSE I DON’T KNOW WHAT THE FUCK I JUST DID!!!! I feel like I have a fucking alien inside my body! I am terrified to move wrong so I don’t break or disconnect anything, what if I end up paralyzed?!?!?!

An MRI is like the biggest magnet we are ever gonna come into contact with right? So If it’s MRI approved, I should be good right?!?!?!?!?

Why does this book tell me to AVOID ALL MAGNETS…stereo speakers, computer disk drives, keep everything a minimum of 4 inches away from the implant!!!!! So I can’t carry my cell phone in my back pocket?

OH! And I have to shut it off before driving?!?!?!?!?!?!?!?

What the hell did I get myself into?!?!?! Why wasn’t this information available before surgery?!?!?

OH and it says NO skydiving, or things that could jostle the impant. Does that mean NO Horseback riding?!?!? High Altitudes should NOT affect the device?!?!??!

Can we just say I had a really bad couple of days? Maybe even a couple more melt downs. I FELT tricked, lied to, deceived….you get the point. How could I go in an MRI (remember really big magnet?!?!?!?), but I had to be afraid of a stereo speaker?!?!?!?

Once I calmed down enough, I came to the conclusion that this device was already in my body, so I should at least give it the benefit of the doubt. I went through each of the books that they had given me marking each page with questions. (I ended up with 2 pages)

Finally the time came for my post op appointment. I knew that the drug rep would also be there and even though, doctors weren’t allowing patients to bring anyone with them to their appointments ( smh covid) I NEEDED Einstein with me, so HE WAS COMING IN WITH ME!!!!!

I’m not sure if it was the xanax I had taken, the fact that the office didn’t fight me about bringing Einstein in, or the fact that while we were waiting to see the Dr.we began talking to another patient that had also had the same surgery, (but for different reasons) but by the time we were shown to the exam room, I began to relax.

So far I have written about my emotions concerning this surgery. Emotionally, I did not do well. Do I regret getting the Interstim? Honestly it is too soon to tell. I DO however, regret that I didn’t meet with the Medtronic Representative BEFORE surgery. I WISH, I had seen the device, and all of the equipment that comes with it…but that’s on me.

Our conversation with the doctor and the representative lasted over an hour. I will continue to write more about my experience in the future, but I don’t want to leave you with any misconceptions…. Here are some points that were explained to me.

  • The interstim leads were NOT placed in my spinal cord, but by my sacral nerve. (meaning the device should not paralyze me, if I do get a shock)
  • The warnings concerning magnets is that they could turn the device off, but will not cause it to pull out of my body
  • Flying in an airplane is safe (I hope) and I am allowed to go horseback riding after I give everything more time to “settle”.

I’m am still nervous and anxious, but I’m no longer terrified. As I mentioned before, this device is already in my body, so I should at least give it the benefit of the doubt.

Being a Human guinea pig

A quick search of Google defines A Human Guinea pig as “something you experiment on. When someone calls himself a human guinea pig, he means he tested a theory or method on himself.” When someone allows themselves to be a human guinea pig in the medical community, they allow doctors and/other so called experts to experiment on them.

Why would anyone allow themselves to be a experimented on?

While I can not speak for others, I can tell you the reason I DID was out of desperation. I have never been good at taking no for an answer, or hearing there is nothing else that can be done. When I was in my mid thirties I had reached my breaking point regarding urinary incontinence, urgency, and retention.

A little bit of history

My bladder issues began when I was around 28 years old. I would have the urge to urinate so strongly that I would leak, yet I would end up sitting on the toilet unable to void even a drop of urine on my own. After trying for several minutes, I would stand up, begin to redress myself only to start leaking again. These leaks were not small drops. Next came wetting the bed. (Ironically this occurred at the same time I was potty training my daughter) grrrr

Time to see a urologist

The doctor came in to the room, literally shrugged his shoulders and muttered, “You have MS, and you’ve had a hysterectomy, what do you expect?” He said, “there is nothing that can be done”, and left the room. I was shocked and outraged.

Urologist Number 2

After “licking my wounds”, I made an appointment with another urologist who I immediately lied to. I purposefully omitted the fact that I had a hysterectomy and MS when filling out my patient forms. After the doctor performed a post-void residual, (a test that measures the amount of urine left in the bladder after urination with an ultrasound.) and they questioned why I had no uterus, I was “busted”. The tears that I had been holding back for months rushed from my eyes as I began to choke out my apology and an attempted explanation for my omissions. Thankfully he was very understanding of my desperation. He sent me to an office at the hospital to learn how to self cath.

I have been doing this ever since. I have tried every Anticholinergic on the market with limited success from each. I’ve have had urodynamics testing performed numerous times. I have gone through bladder retraining and pelvic floor therapy. I have restricted my fluid intake to the point of dehydration. All of these things “helped a little” but not enough, and not for long. Finally, urologist number 2 referred me to a specialist at Loyola University Medical Center in Chicago.

Introduction to being a guinea pig

After meeting with this specialist and undergoing urodynamics testing again, she informed me that I had exhausted all forms of approved treatment for my conditions. Fortunately though, the hospital was currently seeking patients to enroll in the study of Botox treatments for Urinary Incontinence. I would even be paid to participate in the study if I was interested.

I can, and may at a later date, write an entire post about my experiences while being involved in the study, but at this time I am simply going to state the the treatments were approved.

For the last several years, I have been receiving botox injections in my bladder. During the trial, and for the first year or two afterward, every three months, I would drive an hour and a 1/2 into Chicago to have this performed . The procedure was done in the doctor’s office with the whole thing taking a little over an hour. Here is a link to the drug company if you are interested…. Botox treatments for bladder incontinence.

I was on top of the world! I still had to self cath, but I was rarely leaking anymore and I could go hours in between bathroom breaks!!!!!!!! No more poise pads, wearing depends or constantly feeling that I smelled like urine!!!! Botox worked great for me, until it didn’t.

The doctor at the university told me that most of her patients could go 9 months between treatments, and she refused to do them any more frequently than that. Research from the drug company stated that recommended time between treatments is 6 months although, they could be administered as frequently as 3 months. Feeling “normal” for 3 months and then “regressing” to leaking, pad and depends wearing was not an option for me. So the search for a new doctor began.

It took me more than a year to find a doctor that was willing, and able to perform the injections more frequently, but even he was not comfortable with doing them more frequently than at 6 month intervals. Also, he could not perform the procedure in the office, like I was able to at Loyola. I would have to receive botox at the hospital in an outpatient surgical procedure. If you would like to read my vent about it having to be surgery, please bookmark, “you’re getting botox where?”.

During my initial visit with my current urogynecologist, let’s call him Dr. S. , he informed me about a ‘newer’ treatment that was being used to help manage OAB or overactive bladder called the Interstim by Medtronic. The problem was, the device was not safe for use in MRI’s. (Until recently, I have had to have MRI’s yearly to remain on Tysabri. Now I have to have them every 4 months, but that is another story.) So having the Insterstim implanted was not an option for me BUT….

The same company that developed the Interstim, developed a treatment called PERCUTANEOUS TIBIAL NEUROMODULATION or PTNS. Their website provides this information about the procedure if you are interested.

MEDTRONIC BLADDER CONTROL THERAPY DELIVERED BY THE NURO™ SYSTEM

  • Known by doctors as percutaneous tibial neuromodulation (PTNM)
  • Targets the tibial nerve above the ankle
  • Does not require a programmer
  • In-office therapy
  • Starts with 12 weekly, 30-minute sessions followed by maintenance treatments every three to four weeks
  • Used to treat the symptoms of OAB but not retention
  • Does not cause unpleasant side effects like oral medications can2
  • Ideal for people who can’t tolerate surgery

I’ve also posted this video on my Youtube channel showing how PTNS is performed.

So again for the past several years I have been somewhat successfully able to manage my bladder issues, with a combination of PTNS, frequent self catheterization, and surgery to receive botox injections every 6 months. Some time during the last year though, I have begun waking up soaked almost every night or having to sleep with an indwelling catheter, in spite of having all these treatments.

In October of last year, Dr. S told me that Medtronic had come up with an Interstim device with Surescan MRI SAFE leads and was just waiting to be approved by the FDA. In February, it was still not approved, so I had botox surgery again. Maybe this is the last time?

Each month when I went in for PTNS, I asked Dr. S if the FDA approved the device. Each month he told me, “not yet but they are close.” I would grit my teeth and tell him I would see him in 4 weeks. When I was at my appointment in July, Dr. S surprised me when he came in to the room and announced, “We are going to go ahead and schedule you for surgery next month”. “Seriously?!?! It’s really been approved?!?!?” No, not yet, but they are saying any day now.

Surgery was scheduled for 8 am on August 19th.

I got a call from their office on August 12th, stating that it had finally been approved and surgery would go on as planned. Talk about nerve wracking!

On August 19th, 2020 I had one implanted.