Month: February 2018

McDonald’s “curbside ordering”..wtf?

~ msgracefulnot ~ 17 Comments

This is just wrong on so many levels!!!!!!

I am literally still  smh (shaking my head) at this one…smh

I saw this advertised at McDonald’s today while I was in the drive thru.  Let me give you the back story before I start my attack on McDonald’s.

I am moving into a place that I believe has mold behind the ceramic tiles in the bathroom.  Not wanting to deal with mold in any way shape or form, I decide better be safe than sorry, and just rip out the ceramic tile around the tub.  (yah it will give me something to do to occupy my mind too) Doing physical labor has always been a great stress release for me.

So I headed over to the new place this morning, tools in hand and started work on the tub.  I had my safety glasses on, a mask for dust, broom and vacuum ready for post cleanup.  I had the first wall taken down without issue, and decided to take a clean up break so I didn’t fall on the tiles.

duringI forgot the damn gloves….smh.  I cut my hand on the tile, and I know how to bleed….What a mess!

I finished the remaining walls, swept up the area, but my finger was still bleeding, so I decided to give it a rest.  On the way home I stopped at McDonalds for a fresh coffee.  I used the drive-thru because it’s convenient, though I could tell you I didn’t want to walk in with Blood everywhere, truth is I am lazy.

While waiting for my coffee, I saw a new advertisement for curbside check in ordering.  WTF?!?!?  How is this good or helpful on any level?!?

  • Of course NO ONE would ever consider texting their order into McDonald’s while driving
  • It’s a great idea to mix cars and people in the parking lot!!!  I can already see someone pulling in while texting their order and not paying attention to the person delivering food to someone else.
  • How about all of the cars pulling in and backing out at the same time??!?! At least with the drive thru there is some semblance of order  ( although I have seen that get pretty dicey too)

Ok, I’m done bitching.  Can someone tell me how this could be a good idea in any way shape or form?!?!?  I really don’t get it…. Mentally, I am done for the day.  It’s funny I was telling someone on the phone earlier that it’s ok to just be done and take a break for a day, their issues, problems, etc will still be there tomorrow.  Now I am going to take my own advice and focus on the positive.

Before
After
nothing more than a paper cut

Today was a very productive day in spite of my minor injury…. (it really is minor)  Maybe you are starting to see how I got the name Grace?

 

 

Lately, I’ve been wearing a mask

~ msgracefulnot ~ 20 Comments

As I began writing this, the original title was “I’m a hypocrite”, and something like I feel like a fraud.

The last couple of weeks have been hell!

For those of you that “know me” thank you for being understanding when I didn’t feel like talking.  Every time I opened my mouth, toxic shit came out of it.  When I tried NOT to open my mouth, I gave myself a migraine and had pain everywhere.

vicious circleThis is a vicious circle because after I say something mean or bitchy, then I have to apologize for being a bitch.  (Trust me I have to apologize, because it makes me feel like  a complete asshole when I can’t control my mouth or  my attitude.  Then,  I am so guilt ridden and and and. you get the point right?)

What do you mean last week was hell?

You posted multiple times last week, and they were all “silly” posts.  (Yah for the hidden power of scheduling your posts ahead of time)  To tell the truth, I spent most of the week crying, sleeping, or wanting to sleep.  When I woke up in the morning, if I had managed to sleep through the night, my body was on fire.  I had a migraine every single day, all day.

Saying “I’m fine” when you really are not

Instead of reaching out for a shoulder, I gave the typical “I’m fine” response.  I tried to make jokes, I tried to deflect.  I KNOW this is the WRONG way to deal, but it’s what I did.  Now I feel like a “fraud.”  ( I truly didn’t TRY to deceive, the posts were previously scheduled)  Many of you know that I’ve had a recent and tragic death in the family.  The grief was further exacerbated because I was going through slump week for my Tysabri infusion.

What I haven’t talked about is The Elephant in the Room.  After 30 years, I believe the Grace and Einstein roller coaster is out of commission and it’s hard, really fucking hard.  I am working on a piece called, The elephant in the room that may shed a bit of light on the REAL all time consuming issue in my life.

 

You’re getting Botox Where?!?!?!

~ msgracefulnot ~ 21 Comments

IN MY BLADDER

Who? What?  WHERE?!?!?…..     In your bladder?!?!? 

(Jokes about a bad connection or needing glasses)

Seriously though,  in my bladder (although some other areas could maybe use it to)

I have neurogenic bladder which is described as:

Neurogenic bladder is bladder dysfunction (flaccid or spastic) caused by neurologic damage. Symptoms can include overflow incontinence, frequency, urgency, urge incontinence, and retention. Risk of serious complications (eg, recurrent infection, vesicoureteral reflux, autonomic dysreflexia) is high.

FOR ME, personally, this means when I have to go I have to go.  Get the hell out of my way it is coming NOW!!!  Most times I can tell that I have to urinate before it happens, but not always, and just because my brain sometimes gets the message that I have to pee, it doesn’t mean it lets me know that I have to go more than 10 seconds before it starts to flow…… smh… yeah yeah “it sucks to be me” I know.

Just to keep it interesting though, my body seems to have forgotten HOW to pee.  So my brain gets the message (most times) “Hey you should probably RUN”, and I attempt to move as quickly as possible toward the nearest “facility”.  I get there, and then NOTHING!  Not even a drop sometimes!….ARE YOU FRICKING KIDDING ME?!?!?   How do you live with that?

Learning how to Self-catheterize

For starters, I self- cath.  I have included this link not only to show a “carton image” of how the whole thing is done, but because it cracks me up that even a medical site doesn’t really “get it”.  One hand to spread your labia, your second hand to insert the catheter, and your THIRD hand to hold a mirror?!?!?…lol yeah good luck with that.  Either way I have figured it out, and it helps.

I try to pee on a “schedule”, and before I leave the house, or before I have sex, or go to the store and and and.  I’ve also learned which drinks aggravate my urgency (surprisingly water is worse than coffee) but more on this at another time.

Percutaneous Tibial Nerve Stimuation (PTNS)

I’m not even going to try to explain how this works, but it does help with the urgency.  Here is a link that does explain the science behind it, if you are interested.  I’ve also copied a portion of the site here:

Percutaneous Tibial Nerve Stimuation (PTNS) is a low-risk, non-surgical treatment. PTNS works by indirectly providing electrical stimulation to the nerves responsible for bladder and pelvic floor function. During PTNS treatment, the patient’s foot is comfortably elevated and supported. Also during treatment, a slim needle electrode is placed near the nerve at the ankle known as the tibial nerve. A device known as the Urgent PC Stimulator is connected to the electrode and sends mild electrical pulses to the tibial nerve. These impulses travel to the sacral nerve plexus, the group of nerves at the base of the spine responsible for bladder function. 

By stimulating these nerves through gentle electrical impulses (called neuromodulation), bladder activity can be changed. Because this change happens gradually, patients receive a series of 12-weekly, 30-minute treatments. After the 12 treatments, when the patient’s response to therapy is assessed, occasional treatments may be needed to sustain symptom improvement.

The last time, I went for my “maintenance treatment”, (which is every 4 weeks) the nurse let me take a short video showing how the procedure is done.  I have posted it to my Youtube channel if you want to see.

Botox Injections for Urinary Incontinence

Okay FINALLY to the point of this post.  I am having surgery next week for Botox injections in my bladder. Yes fricking surgery….AGAIN!!!  The Botox website SAYS that the procedure can be done in the office, and it can, but for me it has to be surgery.  😦  I can’t really explain why.  I used to drive to Chicago (2 hours away) to have the procedure done at the University of Chicago, and then drive (albeit uncomfortably) the 2 hours home, but  I had a “falling out” with one of the doctors there about the frequency I felt I needed it and the frequency she was willing to perform the procedure so I have been having it done locally for the last 2 years.

Why does it have to be surgery?

The doctor who performs the procedure locally does not have the equipment or permission or something to do it in his office, so I have to go to the hospital.   To use the operating room at the hospital, they have to call it surgery?  I have to go through the whole sedation game and get a driver because of that.  I have asked them not to sedate me when I go, hell they can even skip the numbing part if they have to, just do it and be done, but that hasn’t worked so far :(.  So next week, I am having surgery, if I can find a ride. ( weather permitting)  What a lousy day!

Surgery will be in the middle of the day.  They will require me to get there with only one cup of coffee in my body.  (They finally agreed to this after dealing with me with NO COFFEE, it wasn’t pretty…. people got hurt ) The check in, vital taking, meeting with the anesthesiologist, (countless nurses), and some doctors too will take approximately 4 hours, and then I will come home and sleep….smh…what a waste of a day.  Oh well, it is what it is, and for me the Botox injections have been the most helpful treatment for my bladder issues.

If you want more information about the procedure ( how it’s done, what bladder conditions that it treats etc) here is their website.  If you have any questions about Botox, or PTNS, self cathing or any other bladder treatments, feel free to send me a message.  Again, I am NOT a doctor, but I have a lot of experience with testing and treatments.  ( I was part of the FDA drug trial for Botox too).  I have lots of bladder stories, including my diagnosis which I will write about later.

If you are having symptoms of bladder urgency or incontinence TALK TO YOUR doctor.  I know it’s not a “fun” topic, but there are many things you can try to not have to suffer in silence.

 

MS and Gastroparesis- My story

~ msgracefulnot ~ 11 Comments

I am going to assume you have experienced Constipation first hand if you are reading this.  If you haven’t or have any questions, I recommend this link to Mayo Clinic for more information.  While Constipation is generally described as having fewer than three bowel movements a week, would you believe that some people are lucky enough to have consistent and almost timed bowel movements?  I personally couldn’t believe that until I starting talking about and asking about “Poop”. If you don’t have a bowel movement regime like that though, don’t worry it doesn’t mean you are “broken.”

My battle with Constipation started years ago, and for years I have jumped through hoops and tried so many different treatments with no relief.  At one point, I even ended up being hospitalized for it.  More people have seen, touched, or in some way “violated” my ass than there are days in the week.  It shouldn’t have been so difficult, THAT is why I am talking about it.

Eat more fiber and lose weight

I am angry that when I asked for help with constipation issues, the first doctor I saw shrugged at me and told me to eat more fiber, drink more water, get more exercise, and lose weight…. Sure I will get right with you on that!  BUT in the meantime….. What the hell do I do?  (Exercise?…. yes I want to run a mile with an extra 10 lbs of shit stuck in my gut.  You do realize I am sitting in a wheelchair right?!?!?)

What do I do in the meantime?

I went to another doctor for a second opinion.  I was all keen on eating better and TRYING to exercise, but being Stuck in a wheelchair didn’t make either of those things very easy.  With limited mobility, I often resorted to cooking prepackaged foods since they were easier to shop for and to prepare.  But I could work on that.  The exercise part still had me stumped though.  The second doctor I saw told me to start using laxative pills and if they worked, to just start taking one every day.

dulcolax warning labelHave you ever read the back of the box for laxative tablets?

On the box itself it says to talk to your doctor if you have to take them for more than one week.  But I’m just supposed to keep taking them EVERY DAY if they work?!?!?!  Seriously?!?!

I asked for a referral to a gastroenterologist.  (When you have an HMO and need to see a specialist, it can take a long time to get an appointment with a new doctor.)

Before I could get into the Gastroenterologist, I ended up in the Emergency Room, because after not having a bowel movement for 21 days, you are not able to add anything to your body.  I couldn’t eat or drink anything, and became severely dehydrated, and had to be admitted.

What is a Soap Suds Enema? What is magnesium citrate?  What is an Upper and Lower GI? What is an Endoscopy? What is a Hiatal Hernia? What is GERD?  What is a colonoscopy?  What is Biofeedback? What is Gastroparesis?

and why did I have to have all of these things before I was 35?  The ANSWER is Multiple Sclerosis.  I felt like I was attending medical school as a patient.  After being discharged from the hospital with a whole slew of new medications, I spent the next year changing my diet, adding more fiber, doing abdominal exercises yet nothing seemed to help.  I was lucky if I had a bowel movement one time per week (so I guess it did help, but still wasn’t acceptable.)

It wasn’t until last year, FINALLY, that I was introduced to Power Pudding.  It’s easy to make, natural, and it works for me.  I don’t know if it will help forever, but I am so tired of testing, drugs, and surgeries.  I don’t understand why the doctors didn’t recommend this first.  (I have ideas, but they involve conspiracy theories about not actually trying to find a cure when there is so much money to be made with Big Pharma etc)

Again, I am NOT a doctor.  I can’t promise that this will fix your constipation, but I can make you aware of it.  If you suffer from Constipation, please don’t wait to start something for treatment.  Of all of the testing I have been through, there was only one that didn’t make me want to cry, and that was only because the nurse administering the test was ridiculous.

The Gastric Emptying Scan

The doctor told me that the test involved eating eggs that would contain a small amount of radioactive material, and then being xrayed or scanned over the course of a few hours to monitor the rate at which food left my stomach.  UM ok?  Eat radioactive material?  I’m in?  When the nurse brought the eggs to me, she was wearing hot mitts like these full arm hot mittsand said, “Now don’t touch these eggs with your fingers because they are radioactive”.   I can’t touch them, but you want me to eat them?!?!??!  I assure you that is the only test I laughed at.

At least she didn’t come in looking like this: radioactive suit