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.

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.

Hey, I’m doin alright….

I woke up this morning in a bit of a panic thinking,  “Que dia es hoy”?

I’m not sure why I always ask that in Spanish, but I do.

What day is today?!?!?!?

My brain raced through all the things I have or had to do this week.

Check Check Check.

Deep sigh of relief…

Ah It’s Friday!  I don’t have to be anywhere until 3:15 pm!!!!

I closed my eyes, prepared to go back to sleep, but then it hit me.

Today’s a GREAT DAY TO BE ALIVE!!!!!

I quickly got out of bed and into the wheelchair to head to the bathroom. Next, I wheeled to the kitchen to hit the button on the coffee maker, and finally to the porch to let D.O.G. out.  As I sat staring at the coffee maker urging it to produce faster, another thought popped into my mind.  At yesterday’s appointment with the orthopedic surgeon, I was given the go ahead to begin taking steps as tolerated while in the CAM boot.  I  jumped up and down!!!! (figuratively not literally)

I quickly raced back into my bedroom and took off the surgical shoe that I sleep in, and donned the knee high cam boot that I used to abhor.  THEN

I STOOD UP and took a step  WOW that hurt!!!

I sat back down in the wheelchair and headed back to the kitchen for Coffee.  (That was two hours ago and I’m still on a It’s a Great Day to be Alive High)

Yes the foot thing is great news, but to be honest it’s not the reason for the high.  My non drug induced High is because I survived a really rough week and lived to tell about it.

I almost thought about turning on the video camera to tell you about the week I have had, because I can talk so much faster than I can type,  But 1 I need a shower badly and 2 I think I am so Happy the words would come out too fast and they wouldn’t be comprehensible anyway.  So instead, I would like to give a brief summary of the week and go into more detail in the future.

Monday

I had surgery for Botox injections in my bladder.  For the first time ever, the anesthesiologist let me stay awake while they finished setting up in the OR.  I have had this surgery at least 2 times a year for the last 10 years, and although I have asked repeatedly not to be put out, I’ve never made it awake longer than a few minutes in the Operating Room.  Spoiler Alert…this MAY be the last time I have to have this surgery!!!!! (More about this next week?)

Tuesday

I woke up on time for my scheduled hearing with the IL Dept of Public Aide!  (That in itself was impressive considering I didn’t get home from the hospital until 9:30 p.m. Monday night)  I have been FIGHTING with the state for many years and finally requested a hearing to resolve the issues.  Spoiler Alert… MAYBE it worked out in my favor?

Wednesday

This was Not my day.  I mean I was not the patient on this day.  I think I have said numerous times that I would rather “take the hit or the pain” than to have my loved ones have to feel it.  Today was my Dad’s day.  I’m still not sure what is appropriate to share about my father’s condition so I will be brief.  Over the last year and a half, my father has been having numerous issues with his vision.  Together we have seen more than 10 specialists looking for help and answers.  While the ‘mystery’ is not solved, Wednesday we received some hope.  I’m gonna leave it there and hold onto the hope awhile longer.

Thursday

I mentioned that above.  I can begin walking!  Since I began writing this post I have taken a few steps.  I’m weak and wobbly, but a step forward is good one so I will take it.  BABY STEPS!!!!

Completely random subject change here… My grandsons have begun taking their first steps while holding onto or pushing things!!!!!!!!!!!!!!!!!!!!  Super exciting!!!!!

Friday (Today)

2 MRI’s at 3 :15.  Although I’m not looking forward to the tube, Thing 2 will be taking me and it will give me more answers to what my next step (see the funny) with my MS will be.

So yay! Today is Friday and it’s a GREAT DAY TO BE ALIVE!!!!!!!!!!!!!!!!!!!

For the off chance that anyone is NOT having a Great day, give this song a listen to, and see if it perks you up a bit.  (It’s actually my Not having a great day song, but it does pump me up.) It’s a great day to whoop somebody’s ass!

Happy Friday Everyone!  See you next week!

 

 

 

 

 

 

 

Are you prepared to die?

Before I continue, let me assure you that this is NOT a suicide note, nor is it a notice of my impending death.  This is a question I’ve asked and answered myself many times in my life.

If you’re not dying, why do you bring this up now?

I just received some unsettling blood tests, and I have some choices that I have to make.  When I receive bad news, in order to not “freak out”, I look back at all the things I have survived in my life to remind myself that I can be pretty damn tough.

As many of you know, I was diagnosed with MS over 20 years ago.  What you may or may not know is that I have had 3 family members die from complications of MS.  This disease has been “in my face” for many years before it actually caught me.  When I was diagnosed, I asked myself if I was ready to die, not if I was prepared, but if I was ready.  The answer was, “HELL NO!”  For the first year though, I didn’t do much to FIGHT it.  Instead, I began drinking ALOT.  I also started behaving very manically, (well if I’m going to die anyway, I’m going out with a bang)

About a year after my “MSaversary”,  I finally stopping running and faced the diagnosis. I began taking the disease modifying drug Betaseron.  For 10 years, I gave myself an injection every other night, yet my MS symptoms continued to steadily progress to the point that I was in a wheelchair more often than not.  I was constantly depressed.  During this time, my kidneys began shutting down, AND I was diagnosed with cervical cancer.  Around the 10 year mark, I think I WAS ready to die.  Not prepared, but ready.

At then end of 2009, my girls and I made the very long hard decision that I was going to begin receiving monthly infusions of Tysabri even though it could kill me.  I decided that QUALITY of life meant so much more to me than QUANTITY!  I have previously written about how the decision was made in a Five part series if you would like to read.  The decision to start Tysabri Part 1The decision to start Tysabri part 2, The decision to start Tysabri part 3, The decision to start Tysabri part 4, and finally, The decision to start Tysabri part 5.

To date I have received 121 infusions of Tysabri.  I credit this drug for giving me my quality of life back.  I do not regret my decision in anyway, in fact I have even argued with my doctor about NOT switching medications when he suggested that I consider it. Last year, I wrote “Who’s the boss anyway”? explaining my reason for denying the change.

At the end of last year, I had to see my neurologist so he could perform my yearly neurological exam, refill my prescriptions, and send me for the required JC virus test to be allowed to remain on Tysabri.  My son in law was nice enough to drive me to Chicago for the visit.  Because of my newest list of injuries, the doctor was unable to provide a complete exam.  The parts of the exam he was able to perform showed that I had increased numbness (lack of feeling) on the left side of my body.  I have also been having some issues with my vision (though I have been attributing that to my age).  He wrote the refills for my prescriptions, and the order for the bloodwork, and we agreed I would come back for a full exam once my foot healed enough to be able to walk on it.  (hopefully March)

NOW let’s talk about these unsettling blood tests….

My bloodwork came back stating that I was now JC+, meaning I had the John Cunningham Virus (JCV).  Not only did I test positive for the virus, but my titer levels are considered very high. 4.8!

hmmmm now what?  I have a decision (well several to make)

Here are the drug facts

In addition to revealing that I have now become JC+, my bloodwork revealed that my Absolute Eosinophils are high.  What the hell does that mean?  A quick Dr. Google search said…

Eosinophils are a type of disease-fighting white blood cell. This condition most often indicates a parasitic infection, an allergic reaction or cancer. You can have high levels of eosinophils in your blood (blood eosinophilia) or in tissues at the site of an infection or inflammation (tissue eosinophilia).

OF course the first thing I saw was CANCER……cmon!!!!!!!  Seriously?!?!?

After speaking with my Neurologist, WE have decided first to have the bloodwork performed again.  (there is always a chance for a false positive?)  Because of the decreased sensation on one side of my body, the increased balance issues, and vision changes, IF the test still comes back with a high Titer level, the first step will be to undergo further testing for PML.  I haven’t even thought about further testing for the High Eosinophils, I honestly believe that everything else going on in my body is causing that.

I have so many questions and decisions to make that I find myself asking again, “Am I prepared to die?”

 

 

 

 

Happy Birthday to ME

When you were younger, I am willing to bet that you eagerly awaited your birthday each year.  Hopefully, you had at least a few very memorable ones.  Maybe some cake and ice cream?  Friends and family over?

So why do we stop celebrating them as we get older?  So many people say, “It’s just another day.”  or “It’s no big deal.”

I call bullshit.  Birthdays are the anniversary of your birth.  A milestone that you have SURVIVED another year.  You’ve reached a new level in the ‘game’ called life.

Today I am LEVEL 46 and I am asking you all to celebrate with me.

I don’t have anything BIG planned for this year.  No major parties.  I’m not going on another adventure.  I am just going to be.  I am going to be grateful.

The only reason I can see to STOP celebrating your birthday is MAYBE when you are no longer alive.  Even then I don’t really see the reason.  I still celebrate my friends and family members that have passed birthdays.  For example, every Sept 21, my late Grandmother’s bday, I buy a hamburger and strawberry shake from McDonalds.  I then spend some time reliving some of my fondest memories of our times together.

Did I mention cake?  Who doesn’t like cake?!?!?

So today is my Birthday, at some point I will see my girls.  We are going out for dinner on the 10th to celebrate all the birthdays together. Thing one will be 28 on the 11th. Her and her hubby are going to a concert that evening, AFTER I bring her a cake.  I am staying the night with my grandson’s that evening. Thing two will be 22 on the 12th.  She has to work all day, but I will be waiting at her house when she gets home with Cake also.  Not quite the sugar coma we faced last year during The birthday week, but there has to be cake!

Thank you for joining me today!