Worst MRI EVER

Today I had to go in for an MRI.  Now you all know my health scare back at the beginning of 2022 where they found a brain mass and I had brain surgery to biopsy it.  Fortunately, it was benign which means it’s not cancer, a real concern to me since I am a cancer survivor and my mother died of brain cancer.  You can read about all this here on my blog if you type into the search engine on the left of my blog.  I’ve detailed my cancer and health journey pretty extensively.

Naturally you would expect checkups to the brain to see if the mass has grown, is moving, or if it’s standing up to be counted.  Well, I’ve since had several trips to the Emergency Room and I had my three months checkup.  It has affected my attitude towards telling my doctors how I’m actually feeling as I don’t want to go in anymore, I don’t want them to stick me with a needle anymore, I’m in pain and they aren’t fixing it anymore.

In June, six months after the surgery I began to experience dizzy spells.  At first it was just the morning thing, you sit up, you go to stand up (not necessarily suddenly) and you feel dizzy, like woah.  Well, this got steadily worse and then I discovered I could bring them on myself by laying back down, bending over, etc.

I was due to have another MRI in November as part of my check ups but because of this dizziness they scheduled the soonest one which was today in August.  Now, because of the fact that it is a brain tumor, they have to do a closed MRI to get the best picture of it instead of an open MRI which has a bit more wiggle room.

Those of you who know me, know I’m a big woman.  Even when I slim down, I can’t hide the fact that I have shoulders that are built for football and I don’t fit in the closed MRI like a normal person.  They literally have to shove me in there and it hurts!  Today was no exception.

I have had many MRIs over the years with my cancer and other health concerns and today was one for the books (pardon the pun). 

I do not blame the health care personnel but damn, my appointment was scheduled for 7:45am, and because they got into their heads that I’m a hard stick, they called and rescheduled it for 6:45am.  I’m a night owl so it only made sense (to me) to stay up and sleep afterwards.  So, I was going in sleep deprived (my own fault, but I was worrying), hungry, and anxious.  For some reason this appointment was causing me to have a LOT of anxiety.  Given what I’ve been through, no wonder why.

With all the chemo and many times I’ve been stuck over the years my veins have scarred over, shrunk, and now hide from the personnel attempting to put in an IV.  This MRI required that they have it with contrast to see the difference in my brain and clearly see the tumor.  I react to that contrast.  It’s not an allergic reaction like you would assume, it’s more of a physical reaction.  In my case, because my shoulders are scrunched painfully in the tube, my neck stiffens up just as painfully.

Today they stuck me five times with the needles to get the IV in successfully.  The first gal, even blew my vein.  I’d just gotten done telling her the tale of how they blew my veins twice the last time and it took three months to heal from that.  Btw, you can still see the bruising on my arm from that time three-months later!  Yes, and I’m not exaggerating!  She was most apologetic but I was just trying to get through this.  I knew my being angry over it and the fact that I was tired and hungry wouldn’t help her do her job.  I really kept myself calm.  She decided after her second stick to call in an RN and if that didn’t work, they were going to do an ultra-sound stick (which I had back the last time I was in the Emergency Room and they blew my veins then!).  Fortunately, after three more sticks, the RN got it and it was a success!  Or, so we thought.

The techs were really concerned when I told them I react to the contrast, asking me the same questions I’d already answered, which is annoying but hey, they weren’t there and it was, at least, noted that I react to this stuff.  They always assume it’s an allergic reaction, they blow me off when I explain it’s a physical reaction. 

Another thing which was annoying me is I’m a chatterbox during these things, part of it is nerves, part of it is that I don’t go anywhere so when I’m out in public, I tell stories.  They cut me off each and every time and not just one person but everyone I ran into this morning.  To be honest, it hurt my feelings.

Finally, I am going into the tube and I did tell them I don’t fit.  Broad shoulders get beat up going into these small, narrow tubes.  It’s no wonder people develop claustrophobia to these things.  I haven’t … yet.  My shoulders do best when I can bring my arms in across my torso so they are ‘pulled in’ and away from the sides.  Nope, they insisted I keep my hands and arms at my sides even though I told them it wouldn’t work.  Sure enough, they hurt me to the point I had to say something as I was jolted side to side into the tube.  They pulled me out again on their automated bed, again squeezing my shoulders against the sides.  Removing their cushions lo and behold when I pulled my arms across my torso a bit, I fit, if uncomfortably. 

Now, you have to lay there through the various scans for forty-five minutes.  Normally, I don’t mind that as I just day dream, um, er, I mean work on a story.  Seriously folks, authors day dream to make their books happen and I’m guilty of that.

They put my head in a cage, which I knew, since I’d gone through this a couple of times already.  I’m a bit OCD about things so, since I could see myself on the mirrors, I made sure my head was aligned to the center.  Thank goodness my nose is straight!  Then, I lay there, thinking about my stories and such.

However, this story isn’t over.  The doctor had ordered contrast with this MRI as I mentioned before.  Once they started pumping in the contrast I yelled out in pain.  My thought at that exact moment was it was too bad I couldn’t scream (I’m not a screamer for the most part, but then, that’s a conversation for another blog).  All I could do was shout out that it hurt, squeeze their little bulb to notify them that something was wrong, and keep shouting that hurts! 

They pulled me out again, banging my shoulders in the process as I tell them my arm is hurting.  It wasn’t just hurting at this point, it was agony.  They don’t remove the cage and I’m trapped there on a bed.  All of my body has stiffened up at this point and my shoulders, which were already hurting, my neck which was stiffening, everything is hurting.  My legs, which are exposed due to their gown (I refused to remove my underwear even though they ‘suggested’ I do so, apparently some synthetic materials these days cause burns with MRI’s and other scans) are restless, twitching, something I had to fight against laying in that tube for so long. 

The tech is rubbing my arm where the IV went in causing the needle to hurt me more!  Turns out they not only blew a vein today but they blew the IV!  The damn thing was administering the contrast not into my vein as it was supposed to, but out under the skin.  While I was trapped there on the table (it’s like a moving slab you see on CSI, shudders), he administered saline and kept rubbing.  The immediate pain subsided and he’s like, “I think we got enough contrast into you to continue with the scan.”  I just wanted to get the hell out of there so I agreed.  I was being very careful not to show my anger but I could sense my face was telling them without my words.  I could do this; I could bear up under the pain.  Every friggin’ joint hurt at this point.  He pulled out the IV which was a relief, and ripped off the tape (ouch), rubbing it all and bandaging it up a little too tight.

When they pulled me out after the last five minutes and told me I could get up and go, I could not rise up off that slab.  My back had seized (I have two herniated discs and two bulging ones from when I sprained my back years ago.  It’s permanent, it’s painful, and it affects other things).  They had to literally pull me into a sitting position with, you guessed it, my sore shoulders and arms.

They explained what happened and I made them explain certain words.  I was tired, I was a wee bit ‘cranky’ shall we say, and my brain wasn’t computing.  I know it annoyed him to use certain words (which I did know, but couldn’t think about the meaning) and I made him explain them to me.  They had me sign a paper acknowledging that he had explained what happened and how it should be treated.  I get that, covering his backside.  I don’t blame him, I really don’t, but I’m sick of my procedures always going wrong.

Driving home, it was still so early and I was tired, out of sorts, probably should not have been driving myself. I got home and slept most of the day away (I hate that by the way, feel like I get nothing done).  My arm has a swelling from the procedure.  It’s about 5-6” long, about 3-4” wide, and about an inch high.  It’s grotesque.

I made it very clear they aren’t getting me in again any time soon.  The guy didn’t seem to understand that I was talking about future procedures.  He thought I meant about doing this again today or something.  S M H.  Seriously, I am so sick of the drama of medical procedures and the beating my body took today.  Now, I await the results.

Emergency Room, again

Well, yesterday didn’t go as planned.  What I planned to do was to listen to a couple of audiobooks for errors to get back to my narrators on any fixits that needed to be done.  What I did instead was slept almost ALL day and then noticed my stomach was hurting, and hardening in a spot by my ribcage.  I turned over, slept some more (no kidding) and woke to find that the spot had grown.  I decided the pain, which was BAD all by itself and excruciating to the touch, warranted a trip to the walk-in.  The walk-in suggested I go the E.R, insisted actually.  I whined about that one!  I’d been to the E.R. twice this year already.  One bad trip, one fine trip…what was this one going to entail?

I drove myself across Wausau to the hospital.  Glancing at my gas gauge I worried about running out of gas with prices being so high.  Still, DOC didn’t let me down.  Even ‘my’ parking spot was open and waiting for me.  They were turning people away at the door.  You can only have one person come in with you.  I had no one with me.  They got me signed in and directed me to the waiting room.  I have never seen that waiting room that full (based on these three trips of course).  I’d been there before but I don’t remember what for, it wasn’t an E.R. trip and even then it was never this full.

I almost had to wait for a seat, but they called someone right before that and I found a seat, and waited, and waited, and waited.  Now, I didn’t mind waiting, they had TV on and I never have seen the NCIS type shows.  I know what they are, but I never watched them.  In fact, I haven’t watched TV in twelve years.  I catch shows now and again on line, but even that interest wains after a while.  The EMT came looking for someone and they always mangle my name.  He came back half an hour later looking for that same person, again it could be my name but he didn’t use my last name and I wasn’t sure.  After another half an hour, I went up and asked and turned out he had gotten the name wrong, but it wasn’t me.

The desk clerk came out and brought me a cup to get a urine specimen.  Everyone in the waiting room watched as I got up to go to the bathroom.  Small town, I guess.  I managed to fill that cup and carefully screwed on the top, wiped down the cup, washed my hands and flushed.  As I carried the cup back around the waiting room to the desk, I didn’t notice that it was leaking.  It left splotches the entire way from the bathroom, through the waiting room and hall, to the desk, down my jeans, in my shoe, to leave a puddle next to me.  I was so humiliated once I realized as she asked for the specimen and I lifted my hand to hand it to her and find it empty but the last of it leaking into my hand.  Everyone in the waiting room heard too.  She asked for another specimen but I was like, not now.  She gave me an empty cup, sigh.  She asked me to go wait in the waiting room again.  Two people cringed away from me, no kidding, sigh.  I waited, and waited, and waited some more.

Finally, they called me and the EMT explained there had been six people before me.  I said I saw they had been busy but I wasn’t going to complain, I’d done that the first time I came there and got chastised for it (on line).  He left me in a meditation room, like huh?  They were using it to draw blood.  I waited, waited some more, and waited still more.  The phlebotomist came to draw blood and I directed her to my only good vein on my left arm.  The others are full of scar tissue from when I had chemotherapy so long ago.  No problem, I filled those five vials in no time (but five??).  Then, she directed me back to the waiting room.  Two people cringed away AGAIN, like really?  I didn’t stink, the urine had almost dried on my pants, and it’s humiliating that they knew that I spilled that on myself, but to cringe away like they were going to catch something.  Cooties maybe?

Then they called me to go back, asking questions (the same ones I’d answered with each interaction).  Name, birthdate, and why was I there.  They took me back to a room in the E.R. and introduced me to my nurse Dawn.  She had the pretties purple and white streaked hair and I told her so.  We women should stick together and compliment each other.  She asked me to change into the gown and take off my sweatshirt, blouse, and bra…the gown was too small and pinched my shoulders together much less across my breasts.  Meanwhile they hooked me up to the automated blood pressure machine (God, I hate those things), the pulse thingy on my finger, and the doctor came in.  Seemed like a nice guy but it would be the last time I saw him all night.  He said he couldn’t give me pain meds because I had driven myself, unless I had someone to pick me up (he asked hopefully), but I said no and he didn’t give me that, or the antacid that he had been considering (I don’t understand that either).  Then I waited, and waited, and waited some more.

A woman came in with a funky machine, she claimed it was to help her find my vein.  I pointed her to the one where they had taken the blood, explaining about the scar-tissue.  She poked me with wand and then with a needle, and again, and again.  After I counted five tries, I said that was enough (the pain was making me jump and clench my stomach muscles where the original pain was) and to get someone who could find a vein.  I was not happy.  I’d been gritting my teeth and pressing my nails into my hands.  Not only did my belly hurt, but now my arm.  The incessant beeping of the blood pressure machine, which seemed to be faulty, was driving me nuts.  My nurse Dawn came in to check on me and I asked her the name of the previous woman who also happened to be named Dawn.  I said, don’t let her in here again, she doesn’t seem to be able to put in an I.V.  She smiled and left me.

In walked a young man (I’m getting so old; they look younger than my kids!) and he too had the same machine as that Dawn.  He started messing about, trying to find a vein in my right arm.  He said my veins were deep (that’s a new one) and then Dawn walked in to ‘supervise’ him.  It took him a bit and it hurt almost as much as her searching around but he got it.  The thing was, the entrance point hurt and they kept assuring me it was in right.  That didn’t seem to stop the hurting though!  They kept telling me, we need the I.V. for fluids and if you need contrast for the scans.  Sigh.

Then another chick came in with an ultrasound.  Those things have changed over the years since I had kids.  The only thing was she had to press, on my stomach, right where it hurt!  And boy did she press hard.  I stopped her after the first few presses because it hurt so much.  She stopped and looked at me incredulous.  Well, if she didn’t press, she couldn’t get the ultrasound.  Um, no shit sherlock, but it hurts if I touch it, your pressing is going to make it worse!  I didn’t say that but I was thinking it in that moment.  Instead, I’m like, well go ahead.  I’m sure the eyes streaming down tears as I gritted my teeth and pressed my nails into my hands went unnoticed.

After she did that the incessant beeping of the blood pressure cuff was driving me crazy and I ripped it off and threw it to the floor.  They didn’t turn off the alarm, but they did ignore it fairly well. 

They finally came to take me to get a scan.  By this point I’d gotten a headache from my blood pressure going up so high with all this.  I also was starting to feel nauseous.  Neither of those symptoms were present when I came in.  As he whipped through the corridors, I became dizzy.  When we got to the cat scan room, he asked me to take out my phone and wallet (metal) and drop my pants for the scan.  The gown barely covered my torso, it certainly didn’t cover my lower extremities.  Good thing I put on clean underwear like Mom always said.  Ah well, they are medical personnel and professionals, right?  I was fine until they put in the contrast which always makes me a little ill.  It went quick though and I was pleased about that.  Until, his assistant came to help me up and out of the machine.  He looked to be 22 years old and here I was with my pants down, literally.  He watched as I bent over in the too tight gown to pull them up.  No embarrassment there, right?  Then I looked down to where I had lain and saw blood on the sheets and looked down at my I.V.  No wonder I was still hurting, it was still dripping blood!  I asked about that and they blew me off.  They wheeled me back to my room.

I get back to my room and I’m waiting and waiting again and the nurse Dawn comes to check on me and ask if I can give them a pee specimen now?  Well, after that contrast which gave me the expected hot flash, I was certain I could give her one.  I didn’t disappoint, I overfilled that cup.  Yuck, nothing like peeing on your own hand.  I cleaned up after screwing that lid on tight!  Then I went back to my E.R. room and sat which felt better than laying down after all that time.  She took the specimen and labeled it but then came back, insisting I lay back as she attached the cuff again.  She wasn’t gone five minutes and that thing errored out again.  Meanwhile she had given me what I assumed was saline in an I.V. drip and had to hook up a pump.  It didn’t want to work and she had to bang on it, no kidding.  So I lay there for another hour as the beeping of the blood pressure cuff, which wasn’t working, continued.  Then, the saline was used up and that thing started beeping.  Talk about torture.  Not like I wasn’t focusing in on the dust and dirt on the ceiling, the beeps of the machines, the conversations from the nurses’ stations and those in other rooms I could hear.

Up until this point I had been pleasant (why get your undies in a wad over nothing you can do), but then I saw the clock.  I’d already been there for five hours!  The beeping was getting on my nerves and I couldn’t understand how they could ignore it for this length of time, not just one machine but two!  I pressed the red button.  I don’t like to do that because it’s pestering them and I really do try not to be a nuisance.  It took them over five minutes to answer, but I figured they were busy.  Another nurse answered and reset the damn cuff machine and turned off the I.V. alarm.  Then I waited, and waited again. 

At five and a half hours the pressure cuff machine alarm went off again.  I pressed the button after a few minutes of listening to that alarm and no one came.  I pressed it again and Dawn came in to reset it.  I asked what was going on as I’d been there over five hours (being generous with the time).  She said they’d been very busy.  I said I understood but c’mon, five hours?  She told me that the results from my scan would take an hour and a half…no one told me that time table!  I looked at the clock and said, fine, I’ll give ya’ll half an hour and then I’m leaving.  This is ridiculous.  Then she left and I heard her say she was going to go home if one more person complained, gee thanx, I can hear you!  Sure enough, that damn machine alarm went off fifteen minutes later, sigh. 

Nearing the six-hour mark I had to pee again.  The I.V. bag must have gone right through me.  I pressed the button so they could unhook everything and I could go to the bathroom.  I heard it go off at the nurse’s desk.  I also heard someone turn it off.  I waited another five minutes before pushing the button.  Another nurse came in and I politely asked her to unhook me so I could use the bathroom.  She very nicely complied, taking off that stupid cuff, the pulse thingy, and unhooking the now empty I.V. bag from my I.V. in my arm.  Then I sat there afterwards and waited, and waited, and waited some more.  It was nearly the six-hour mark when the P.A. came in to tell me they didn’t find anything.

Now, that pissed me off.  They had essentially tortured me for hours with their ignoring of the alarms, especially the ones in my room, and of course the pain they caused me with I.V.’s as well as the ultrasound, but they didn’t find anything?  Six hours wasted that I could have stayed at home and worried instead of in their expensive E.R. bed for what?    When I questioned her further, she said it was gastrointestinal stress or some malarky.  Like they had to tell me something and this was what they could come up with?  My eyes squinted at her and she’s like what?  I said, that doesn’t sound right.  Something is off here.  I could tell by the way her eyes darted away that I was on to something.  That is why I am certain they told me the gastrointestinal BS.  She also mentioned that she had heard I was going to leave and they had just gotten these results from the cat scan, she indicated my chart with paperwork.  Um, yeah, I believe you lady…can I go now?  She sent in someone to remove the I.V. 

As I was getting dressed, she walked in again, leaving the door open as I pulled my shirt and sweatshirt back on…gee, thanx, no privacy?  I always thought when someone knocks on a door you wait until someone tells them to come in before entering a room?  Apparently not.  S M H~

Well, I’ll be calling my GP later today, it’s been a helluva night and my stomach still hurts.  In fact, it hurts worse for all their poking and prodding.  My elbows both hurt and the bruises on the inside of my arms are going to be something.  I ache all over from the uncomfortable positions I was forced to sit in for all those hours.  I am pleased I managed to last the five-plus hours before I started getting angry at their delays. 

Now, I am not mad that there were people ahead of me.  I certainly understand first come, first serve and if there had been an ambulance of course they should go ahead of the queue.  But I had told them I had nothing to eat all day, that I was getting a headache and now acid reflux (both of which I didn’t have until after they asked about them) and still, I got nothing but a diagnosis that really didn’t seem to fit.  They just wanted me gone because I was starting to get annoyed at laying there without any results.  I get that they had to wait on others, but really was there cause to cause me more pain and in some instances agony?  I am not fond of doctors and incidents like these are why.

Benign

On Monday I’d had enough. I called Madison and told them it was cruel to keep me waiting ANYmore as Tuesday meant fourteen days since my surgery with their damned biopsy. I made calls to Madison, to Wausau, and all I got were, “We’ll pass on your message and get back to you” back. How frustrating!

Then, in the afternoon the surgeon called me. Now this chick who looks to be about 26 and drilled into my brain, she sounds even younger. She was in a good mood as she told me the news that the mass was benign. There was a caveat though.

Your body has finite rules on some types of illness. Certain things cannot be in certain areas. That is why the results of my tests took longer, they didn’t make sense. I have a mass, and the type of tumor where it has no business being. The doctor assured me, they had NEVER heard of something like this. She said she KNEW I was unusual, we both laughed at this, but even this, this was odd. I have what is called a Schwannoma.

Schwannoma is a rare type of tumor that forms in the nervous system. Schwannoma grows from cells called Schwann cells. Schwann cells protect and support the nerve cells of the nervous system. Schwannoma tumors are often benign, which means they are not cancer. But, in rare cases, they can become cancerous.

When I heard the word Schwann’s, I pictured that company here in the USA that delivers food and has a swan as it’s logo. My sense of humor won’t let that one go.

Now, these schwannomas do NOT form in the brain…EVER. As a result, they are, from a scientific point of view, VERY interested in this one. So, we are going to keep a watch on it. For the first year I have to have an MRI every three months and then next year every six, and then maybe once a year. I’m fine with that. She rated it on a scale of 1-4 (4 being its worst) a 1 and it really sounds interesting from my curious mind. We will just see if it grows or presses on anything.

So that begs the question, how is it in my brain and where did it come from? The doctor says she believes a few cells were misplaced into my brain when I was forming as a baby inside my mother’s womb. They lay there dormant almost my whole life. They were probably not seen in the open MRIs I have had in the past and as no one was looking for a mass in my brain, not even looked for. These couple of cells that had formed into the mass would not have been discovered if I hadn’t had a reaction to the third vaccine for Covid that I had in December. That reaction led to an MRI that showed the mass, which triggered all of this. Happy 2022.

Once the after-effects of the surgery and the meds wear off, I hope to return to a type of normal I miss, writing again. Fortunately I can stop taking the anti-seizure meds as it’s been two weeks and I’ve had no seizures. Good, no more dizziness or wonky feelings. I’m still on antibiotics for the infections. Tomorrow I get the staples out, YAY.

Now, onto the science and art of living. And, she lived happily ever after.

And a little more health…

On Tuesday, February 22, 2022, I had to return to the Emergency Room. I had eaten that morning and it felt like my distended stomach (the meds were making me swollen from neck to toes it felt, I had edema in my legs too) was pushing into my lungs (which also felt like rocks were in the bottom) and I was in pain.

After my last experience in the ER the previous week, I wasn’t looking forward to this one either, but, the doctors office told me not to even bother coming into emergent care or the ‘walk in’ as they would just send me to the ER. Also, Madison had ordered a cat scan, were worried about me developing an embolism, and really, to me, that didn’t sound too appealing either!

I was determined to listen to the medical professionals. I’m not ALWAYS contrary to sound advice, I do question things, because I’m curious and wish to be informed. Funny side note, when I told the PA (Physicians Assistant) that my kidneys hurt, she asked if I actually knew where they were located because some patients really didn’t know. I knew, lol. Not only my kidneys hurt though, my stomach, which is still bloated, was pressing on my lungs. My other pains included my heart, chest, lungs, and probably a few things in my stomach. She ordered a pretty extensive workup (I didn’t realize). I did suffer through the cat scan, my arm hurting when I had to extend them over my head. Again that damn contrast crap.

I lay in that room for hours, refusing television (which I don’t watch and haven’t for over a decade). Thinking though, fantasizing about plans I’d LIKE to make. I took a ‘trip’ in my mind.

I also wondered about the P.A. who was taking care of me. She was cute as a button and to my fevered mind was flirting with me. Alas, I found out from a friend who worked there that she was happily married and had children. Ah well.

They found that none of my internal organs were damaged (thank goodness). The pains I was experiencing were probably from the meds I were on. I had a lot of infections which they narrowed down to a UTI (Urinary Tract Infection) which actually covers more than that area, weird. The pain shifted from across my breasts and chest to the left side which seemed to relieve them.

The edema I have to live with, putting my legs up above my heart whenever possible so the fluids drain properly. I didn’t realize that edema could go up above your knee, hell, above your legs. I was swollen not only in my legs, but around my crotch area, my stomach, and up to my neck! A lot of that is due to the medications. Thank goodness they were running out. The one I didn’t like the most was the anti-seizure medicine. It made me woozy and a little nauseous. I really hate the dancing around the edges of my vision.

One odd but good thing about all this is that my blood pressure, which had been high since I got Covid in 2020 has finally gone back to normal, yay!

After four years, um hours and being patient (stop laughing, I can do it), they sent me home with antibiotics. Now, to just wait on the prognosis from the biopsy. They said a week to 10 days. It’s beyond that and I think a bit cruel to make wait beyond that week to 10 days!

Brain Mass Saga…

I really don’t know how to start this blog.  However, it’s going to be long, I may ramble a bit, so please hang in there and enjoy the tale.

As you know in my previous blogs, I’ve been releasing a lot of Spanish books.  For those who didn’t read my blog’s warning about all the releases, you will have to bear with me over the next few days where even more will be released.  I got a lot of friggin’ work done and I’m proud of it, so each and every short story, novella, and novel I got out, get’s a blog of its own, announcing its release.  More to come, because I’m working again.  By the way, this will happen again as I’ve signed contracts in Portuguese and Italian for many of these same stories.  Each and every one will get its own release announcement.  Ignore them if you don’t read that language, I’ll still be announcing them.  But, that’s for later this year.

That isn’t what this blog is about though.  I know that my friends and fans who read this, are hoping for news about the mass in my brain.  I had to wait over two weeks from the surgeon in Wausau telling me about it to get this appointment.  There were delays because we wanted the scans from last week for this ‘best surgeon in the country’ to see.  There was a lot going on in that time because insurance was involved and people kept trying to cancel the appointment for the scans.  I fought very hard to keep those appointments because I KNEW we NEEDED them for the brain surgeon’s appointment yesterday.  They were VERY important, or so I was led to believe.  Here is what happened yesterday.

I live outside Wausau in a relatively small village.  To me, it’s the gateway to the Big Woods of Wisconsin.  Lots of lakes and trees and the Big Woods was made famous by Laura Ingalls Wilder and her descriptions of it in her book by the same name.  It’s a beautiful place to live. 

However, it is a small-town mentality, and dealing with it sometimes is not easy.  After my initial prognosis and fighting to get the scans, I was told that they wanted me to go to the University of Wisconsin in Madison to see ‘the best surgeon in the country’, the surgeon that my neuro-surgeon in Wausau would see if he had the same condition as I did.  Impressive, right?  Madison is a two-and-a-half-hour drive from my village.  I usually don’t mind these kinds of drives but in the last couple of years of inactivity due to the pandemic I am finding my body has aged, my aches and pains are worse, and I’m not so inclined to take such trips.  Still, I had to go to find out what this surgeon recommended.  I did ask, a couple of times, what this appointment was about, was it a full exam that the surgeon HAD to meet me, or was it a meeting that could have been taken care of with zoom?  The nurses and insurance people I spoke with did NOT know. 

It wasn’t until the day before (Sunday) I started getting a bit nervous, after all, I’d seen the MRI scan that showed the mass in my brain.  What some of you do not know is that my mother died of a brain mass, 21 years ago.  Seeing her lose her mind, both literally and figuratively haunts me to this day.  I have a lot of regrets about that time in my life.  And, to return from her funeral that January with pneumonia myself and my son with bronchitis, compounded the whole situation.  Then, four months later I found out I had cancer, lymphoma.  2001 was NOT my year.

I gassed up my little SUV and it cost me $45.00.  Gas prices are high right now and I get that, but I had planned for this.  Money is also tight for me right now and budgeting these things is something I have no choice but to do.  I set out nearly three hours before my appointment because of possible delays.  I am not familiar with the city of Madison and knew I’d have to rely on Google maps to direct me.  Now, those of you who know me, know I have a love/hate relationship with GPS.  It does NOT like me and more often than not has gotten me lost.  Fortunately, today, it directed me to the University of Wisconsin Health Center with only one hiccup…it made me drive across the whole friggin’ town, on town roads instead of the most direct route on a highway to save time.  Every bump on the local roads, every pothole, every street light.  I didn’t mind except that whole long drive, all you have time for is to think, long thoughts that might not be conducive to good things.  But, it got me there, so I was grateful.

Let me tell you, it is impressive.  The university, the whole medical center, it goes on, and on, and ON!  It’s HUGE!   Then, trying to park, what a busy place.  I expected it, but being a hermit, it could have been quite overwhelming, it sort of was.  Then I got the first parking spot (a psychological bonus) and went in.  They would not allow me to wear my cloth mask.  Okaaaay, they gave me a surgical mask which I gladly put on to keep them happy and everyone safe.  I’ve been a big mask proponent from day one of all of this.  They were very kind and directed me to the neurology department.  It reminded me of a garden, modern, but not too modern and friendly.  But damn, people were zipping about and so many of them.  It wasn’t crowded but it was non-stop.  I was early and expected to wait a while.  My phone and reading the news was thwarted by whatever they had set up in the hospital.  Amazingly, I didn’t wait long and the time was filled by filling out a weird little questionnaire that wasn’t very impressive or professional.  Okay, it’s their place of business, I’m just visiting and I’ll do what I’m told.  They show me into an exam room.

The nurse goes to take my weight, my blood pressure, and I politely ask that she do that by hand because I always get hurt by the pressure cuff.  I have big arms, from the days where I used to work out, and all that has turned to fat and it hurts when they use an automated machine to take the pressure.  She didn’t really show it, but I could tell she was annoyed by the request.  However, another nurse told me a while back that this request was not unusual and if it’s my preference to always ask for it, so I did.  This nurse hurt me with her overinflation of the cuff, what I was trying to avoid with the automated one.  Ah well, maybe it was an accident.  She took some basics and then left me alone.  And alone.  And alone.

I am NOT happy

I started texting a friend, since that was the only thing that worked on my phone.  Letting her know what was going on.  After nearly an hour though, my patience was wearing thin.  Now, some will tell you I am NOT a patient person, I’m one of them that will tell you that.  However, in my defense, it depends on what the something is that I’m having to be patient about.  Leaving me in an examination room, no magazines, no word on how long the doctor will be, no nothing, is about respect.  Furthermore, there was some type of machinery in the next room that sounded like an oxygen pump going off continually, and it was loud.  Then, the fluorescent light above me in the room started flickering.  Guess what I was focusing on, the noise and the light.  Twenty minutes and they should come and tell you, hey, we haven’t forgotten about you, but we are aware that your time is valuable and will be with you as soon as possible.  That is respect.  That is acknowledging that your time is just as important as theirs.  At forty minutes, I’m starting to fume a bit, I’m thinking of leaving but my friend points out that I’d be spiting myself, since I fought so hard to get to this point, drove so long, etc.  Good point.  However, I didn’t say I’d leave the building, but I was thinking I would seek out someone as to why I was being treated like this? 

It was nearly an hour before a nurse came in.  I let her know in no uncertain terms how I felt about being kept waiting for nearly that hour.  Now, this isn’t my first rodeo about this type of disrespect and they always come up with, well, we have other patients, blah, blah, blah.  I am not stupid.  I’m fully aware of the fact that there are other patients and I expect to get my doctor’s full attention for the time I am with them too.  I expect they too expect to be treated with respect.  Leaving me in that room for that amount of time without a heads up as to what is going on is not respectful.  I let her know that.  For some reason, she jumped to the conclusion that I wanted to cancel my appointment right then and there and leave.  No, that was not what I was saying at all.  I calmed a bit and we both ignored the rude way they had treated me and went over their lame questionnaire, her asking me to fill in the blanks on my medical records that they had.

Since 2001 I have been very well aware of the mistakes that can be made in a medical office.  The gaps here though, in 2022 in a facility such as this, were unacceptable.  I had non-Hodgkins lymphoma in 2001.  I took an experimental treatment with Stanford.  All of this I have blogged about before and you can look it up in the search bar above.  I won’t repeat it all here, now.  However, they had down on their medical records that I had both Hodgkins Lymphoma, and non-Hodgkins.  There were other things that were wrong as well.  The nurse had no problem deleting some of the information but it made me think, how easy it is to delete information off my medical records.  This could be good and bad.  Something I asked her to put on there was that at no time was I EVER to be given narcotics, especially in the form of anesthesia.  I always react badly to this, and have told every medical person I come in contact with, because they friggin’ DON’T listen and I’ve been given this crap, only to be sick for days and weeks afterwards with projectile vomiting.  No kidding.  Gross, and you probably didn’t want to know about this, but it’s important.  There are alternatives to putting narcotics in anesthesia.  Some doctors are lazy and don’t want to research what they are though and narcotics are the easiest way to put a patient out.  I’ve experienced this before and suffered as a result.

By the way, those scans I had fought so hard to have done, so this surgeon would have the complete picture, hadn’t even made their way down into their system here in Madison.  Only the notes someone had compiled who had read the scans!  Wow, sure glad I made such an effort (this is sarcasm).

The surgeon I was expecting first of all I had been led to believe was a man.  In walked a nice woman who introduced herself as my surgeon.  I was confused, but trying to go with the flow.  My first impressions about this place and the wait had not put me in an especially good mood.  I thought perhaps I should just calm down and see what was going on.  The nurse started repeating the information to the doctor, going over everything we had just gone over, and getting it WRONG!  Good thing I was there to correct her but at the same time, I felt my input was not appreciated.  Um, hello, it’s my medical care and it’s important to me!  I realize they see hundreds of patients but if you don’t advocate for your own health, your own well-being, then these people are going to make mistakes.  I’d already seen several of them.  After going over part of the information the nurse suddenly and abruptly left me alone with the surgeon.

Now, this surgeon, while she seemed like a nice person, was mumbling and that bothered me as I have to understand what she is going to do.  She didn’t do anything at this meeting.  I was getting the same meeting I’d had back in Wausau with the neurosurgeon there, but now 2.5 hours away in Madison.  What a friggin’ waste of my time and energies.  She told me she wanted to do a biopsy of the mass.  I’d already been told this.  She is a surgeon; she’s going to want to operate.  That’s what they do, don’t they?  She told me that they needed another MRI.  She’d been told I didn’t do closed MRIs because of my wide shoulders, and because it hurts.  She seemed to take pleasure out of informing me that she needed a closed MRI despite the fact that she knew it would hurt me.  Seriously?  She did explain that a closed MRI would give her a better scan, a better map of my brain.  That an open MRI ‘fills in the gaps and those gaps are blurry.  Okay, that’s logical.  Still, I couldn’t forget the pleasure she got at the idea this was going to cause me pain.  She also insisted it had to in Madison instead of having one that was convenient to my home.  Hell, the open MRI is literally 1.5 miles from my home, I could walk (except for the temperatures this time of year).

I pointed out that it was a long drive down here and asked after the surgery would I be able to drive myself home?  She asked if I had driven myself here to this appointment and, startled, I replied I had.  This seemed to bother her for some reason.  No one has told me at this point I can’t drive.  She became condescending a little and said that social services would arrange for a social worker to help me.  That they would arrange for me to be driven to and from the surgery.  I bristled at her tone and the words social worker, as though I was too inept to make my own decisions.  Her tone further bothered me, and her mumbling.  She also jumped on the fact that I’d had lymphoma in the past and seemed to think that this was a reoccurrence, causing the mass.  I am skeptical, after twenty-one years?  I don’t think so.  My confidence in this ‘surgeon’ was not there, at all.

She left me as I couldn’t think of more questions.  I did know and told her that I would think up more on my way home.  She said I could call her office.  I pointed out it wasn’t easy to get through to her office and she smiled and left, telling me her nurse would be back to schedule the MRI appointment and the surgery.  I waited, and I waited, and I waited…AGAIN!  After the way I had already been treated, disrespected even, I walked out.  Enough already. 

I called the other neurosurgeon’s office once I got back to my SUV.  It was already late in the day and all I got was a phone nightmare of press one for this and two for that.  I finally got someone on the phone who took my message, asking the name of the surgeon I was referred to.  I didn’t tell them on the phone but I felt the original surgeon I had been told I’d be seeing, had been switched.  I was promised the A-Team and got the B-Team instead.  I wasn’t important enough for them to give me the best.  The woman on the phone informed me there was nothing in my records indicating WHO I had been referred to!  WHAT?  Apparently, it just said UW Health, not the name of the neurosurgeon who they told me was the best in the country.  WTH?

On my way out of town, I stopped at a couple of stores we do not have up here in the Northwoods.  The GPS got me there no problem.  It was as I was trying to leave town for home that the familiar GPS problem arose.  This exact same problem had happened one other time in leaving Madison.  For some reason, the GPS instead of sending me slightly east and then north, wants to send me west.  I caught the error within twelve miles and turned around, the GPS was NOT happy.  I turned it off and used dead reckoning and my own innate good sense to counter it wanting me to go a helluva long way out of my way to get home.  I took highways to the interstate to head home.  Not even halfway I realized I needed to stop, not only for a bathroom break, but to gas up again, and to get some dinner.  I was becoming sleepy and it was already dark, not a good combination and I had over 100 miles to go yet.

Unfortunately, I took the wrong off-ramp from the interstate and got lost in a town, unable to find my way back to the interstate.  I wandered around for quite a while until I found the road I had originally thought I was getting off on, stopped for gas (another $31), bathroom, and then went across the street for dinner.  I sat in the parking lot to eat part of it, take some caffeine intake (soda, which I have to limit with my stomach), and to further contemplate what had happened to me.  I have to admit, I’m in shock at the appalling way I have been treated.  I did not finish my dinner, but found my way back onto the interstate. 

That amount of time is a lot of time to think, alone in an SUV with nothing to distract you.  Yes, I’m concentrating on my driving, because, you know, deer in Wisconsin are those big white-tailed deer who have a tendency to want to get hit on the interstate.  BUT, a lot had happened to me in the last few weeks including the death of friends…as I wrote in a previous blog my friend Carrie had died.  I was passing her hometown on my travels and couldn’t help but think of that and her.  Thirty-eight years is a long time to know someone.  I do miss a lot about her and the fact I can’t call her and talk to her.  A lot of regrets there.

So, this is my tale of waiting on this much-anticipated appointment.  They built it up as so important, so vital to my care, that I thought I have to get down to Madison for this.  Come hell or high water, I had to see this surgeon.  What a letdown.  It will be interesting to see the fallout in the coming days from this.  I’m incredulous at these behaviors and will not put up with being disrespected like this.

Like why did I have to pay over $70 in gas to get there for an appointment that could have been taken care of, realistically, by zoom?  Why waste five hours of my driving time for this?  Another hour in the exam room to be only partly listened to?  For this, I showered?  Shaved?  Put on a bra?  Really??

Stay tuned…

Sorry, not sorry

I just set up 26 new blogs that will be coming out. If you do NOT speak Spanish, you may just wish to scan through them as they come in and ignore. There is one in Italian (yay). I’ll also be randomly updating on my health (got permission to have the scans and going down to Madison next week to see the best surgeon (or so they tell me) in the country). Stay tuned!

My brain is back…

As mentioned in previous blogs I suffer from Chemo-brain.  This is from having had cancer in 2001 and the treatment caused this, lasting the rest of my life.  You learn to live with it, work around it, and eventually kind of forget you HAVE it.  You just deal with forgetting things, having things on the tip of your tongue, and almost as though you have half a brain.  For some, this can be devastating.  For others, they didn’t have that half of brain in the first place.  I was rather upset as it reminded me of the brain problems I had after having had children, you take about 3-years to come back to being yourself, and in my case, I got pregnant again, and then again, so it lasted even longer.  I learned to live with it but I did resent seeing one of my sons, with my wicked sense of humor able to snap off quick-witted answers (okay, smart-alec answers, we all know I’m THAT person) so readily…that used to be me!

This is not to be confused with Fog-brain, the after-effect or long-term effects of having had Covid 19.  That’s a whole different animal.  With fog brain, you are tired, listless frequently, take a lot of naps, and it just seems to linger.  It causes depression, antipathy, and like chemo-brain, things are on the tip of your tongue but you can’t get them out.  You lose your train of thought so badly that the train has hit you in the forehead.  So many times I can’t find a word that I know I knew.  I’ve dealt with that for two years and the doctors I asked for help, treated symptoms, but sleeping 16-18 hours a day is no help.  I wanted to WRITE!  I COULDN’T write if I couldn’t concentrate or stay awake.  They weren’t too sympathetic, mostly because this virus and its long-term effects aren’t really known.  It also affects people differently, so there is no standard, no norm that they can go with.  So, treating the symptoms is all they have.

Well, I don’t know if it was my grief and the intense crying I did or WHAT, but last week the fog lifted and I was able to get a tremendous amount of work DONE!  It was like the days of old and I worried each and every day that it would be taken away again, the fog would come back.  I’m still worrying of course.  Meanwhile, I’m making hay while the sun shines and getting as much done as I physically possibly can.  So many things behind the scenes that ya’ll don’t realize you do until people see the final results.  Getting these books out in Spanish, short stories and novellas alike.  Making new covers, formatting, and correcting things.  I was in heaven but now collecting the URLs after publishing them and announcing them on this blog are taking up a lot of my time, meanwhile, I have other books for my authors to work on too!

I’m very optimistic right now.  I’m feeling ‘normal’ as I wait for the tests to scan my body and determine if there is cancer in there and if it has metastasized to my brain.  One moment my author’s mind thinks of the ‘story’ behind this, then the paranoid me thinks the worst.  There are some ups and downs.  Getting my work done and out though, has its perks and is making me feel good.  It also exhausts me in a good way, knowing I’m accomplishing something, anything.  I’ll keep you updated as I find out things.  Please hit the subscribe button down below so you get this blog delivered to your email when I come out with new information.  You can choose to ignore those things that don’t relate to you or don’t interest you, but at least you are getting the 411.

Thanks for all the well wishes and those who are following along on my journey.

Ups & Downs

Last week I had some of the most intense and tragic events in my life, EVER.  And, that’s saying something.  I think I was reeling in shock most of the week.  Coupled with depression, some of it nearly fatal, and news that really knocked me over, it was not a great week, hence the title of my last blog, My week from hell

Since then, I’ve felt like I’ve slowly been coming out of my fog.  Literally as well as figuratively.  Living with the long-term effects of Covid, I literally have had this fog for two years now.  The last 2-3 days though it lifted enough that I’ve been working my butt off, getting work out that I’ve procrastinated on because I couldn’t concentrate.  Except for a headache that has been there for about three months, I’m coping and able to ignore it.  I have to wonder if the headache is from the brain mass. (Ya think?).

So, over the next few days (those of you not interested you may wish to ignore the next three dozen blogs about Spanish books) I’m releasing various books that I’ve been formatting, making the covers for, and editing (yeah, my Spanish isn’t great, but some things are universal, thank goodness for the basic Latin languages).  I even signed a contract to do about half of them in Italian so I get to do all this AGAIN in about six months (I actually love doing that once it’s all figured out, making the covers, formatting the e-books).

Not only have I been working like mad (you do have to work while you have the time, the energy, and the fog has lifted) but…I’ve been in an extraordinary GOOD mood.  I’m a fairly optimistic soul (even when the glass is half-empty, cracked, and leaking ~ Oh look, more room for alcohol (I rarely drink)) and I try to always find the silver lining.  That silver has been tarnished of late and the blows kept coming, but I have to say the last few days were GREAT!  As a good friend say, the REAL me IS inside there, Alive and Well.  Well, it’s nice to see me again and it inspires me to work while I can because I honestly don’t know HOW LONG this will last.  That’s what worries me, falling back into that abyss.

I’ve been trying to get in to get the three scans that the neuro-doctor ordered.  The knee jerk reaction of all insurance companies is to refuse, because, you know…COST!  The fact that people’s lives hang in the balance of their paper-pushing decisions really sucks.  I get that there are doctors out there who order tests that not only are unnecessary, but expensive.  However, some of these are necessary and waiting on them is part of the stress. 

I got a phone call on Monday but because I am a night-owl, she called too early for me to get the call.  She left a voicemail and talked so FAST I could NOT understand her.  I had to listen to it 3x before I understood what she was saying, really!  Then, about 7 minutes later another call came in, a computer calling me to say the same thing, that the coverage was denied but they added that I could appeal their decision by calling a number.  When I woke up, I called within a half an hour, once I’d had time to process what I had heard.  They told me they would allow the scans with contrast but not without contrast (oh joy, another IV in my arm).  That was on Tuesday (because you know, worrying over the weekend was fun and all that, and it was a holiday weekend to boot).  I called my doctor’s office immediately (try to get through THAT switchboard, wow) to let them know that the scans were approved and hopefully to schedule them.  They hadn’t heard that.

I also called later on Tuesday (to several departments), again on Wednesday, and today on Thursday.  Finally, today someone called me back and I kind of gave her hell for how rude it is not to return phone calls.  Now, I realize I am NOT their ONLY patient, I even said that, but returning a call is important because MY HEALTH is important to ME.  I have plans and they are put on hold as I contemplate my health issues.  As of now, I’m STILL waiting for them to schedule the scans because they still don’t have word (that I got 3 days ago) that they are approved, WTH!

Ah well, watch for the many, many, many blogs coming through.  I’ll try to keep them down to a minimum, but there are a lot of short-stories translated into Spanish that I’m putting out.  One in Italian, and more on the way!  Thanks for following my blog and check out my website.

Meme, because, it’s funny … and true in a lot of cases.

My week from hell

As mentioned in my last blog, I’ve been having a hard time with the after-effects of covid, menopause, and mental health issues as a result of these. 

On Friday, January 7, 2022, I began to plan out my suicide.  I’m a planner after all and there are details I wanted to get right.  I didn’t want them to find me naked, so what to wear was a concern.  The thing is, I didn’t want to call anyone and give them a heads up.  I had tried to get help from doctors who didn’t care or didn’t want the responsibility to help me.  I had TRIED.  I had even gone to therapy years ago at $200-$300 an hour only to realize for FREE I could get the same help and advice by talking to my friends.  What stopped me, literally, from actually doing the deed was that there are stories I want to get out, stories I want to publish and share, so many on my laptop that I stopped counting at about 200, no kidding.  I know that doesn’t sound like a good reason, but I grasped onto it.

See, I KNOW that to think about suicide is a no-no taboo in our society.  I knew that me having these thoughts is NOT me.  That alone told me a lot.  Something was wrong that I would stoop that low to have such thoughts.  I am a strong woman, have had to be for all my life and I have taken pride in that strength.  To cop out by suicide would mean a weakness in me that I could not allow.  Something was wrong.  I’d had some thoughts about it last May, but I put it down to the hormonal changes from my surgery and menopause.  Having been depressed a lot all summer long, I was relieved by the supplements I took that helped lift the covid-fog long enough so I could write.  But, by August when I once again entertained those thoughts and told my doctor, their reaction turned me off by telling the very person or persons that were supposed to help me.  Something was wrong and I told them so but they blew me off.

On Saturday I went to call a friend of mine from my college days.  Carrie and I had lived in the same residence for young women in Milwaukee, called Saint Catherine’s that took in women from all over, provided them with a woman’s only residence, safe, clean, and a fantastic experience.  We’d been friends since 1984.  Something was weird with her phone.  I’d tried a couple of weeks ago to reach her only to have the phone be wonky.  I had left a message of, “Don’t make me call your mother.”  It was a standing joke between us, because if something happened, of course you’d call family to find out what happened.  In the course of looking up Carrie’s mother’s phone number, I came across Carrie’s obituary.  I was absolutely stunned and devastated.  It had to be wrong, right?  I got a hold of her brother only to learn she’d had a brain tumor.  She found out in August and was gone within four months, almost to the day.  She died on December 16, 2021.  It was only after two days of on and off crying that I realized she had tried to call me once last fall and I ignored the phone call because I didn’t want to be depressed, bummed out because Carrie could be a bit of a mood killer.  I was dealing with my own health concerns and depression was something I was fighting.  Still, over the years we had been able to let six months to a year go by and then talk for four hours straight, it was that kind of friendship.  I will eternally live with the regret of not returning that one phone call.  I spoke to her mother who apologized for not calling me, they hadn’t known my last name.  She said Carrie tried to write me several times but had lost the ability to use her right hand from the tumors and later couldn’t even type.  She was in the hospital for the last seven weeks of her life.  Carrie had wanted to be an author and I was more than willing to get her stories into print, but she was too shy to get them out there and we both thought, simply not ready.  It’s too bad really, she had a wonderfully twisted mind and the stories of hers that I read, they should have been out there.

On Sunday I called a friend of mine to tell her about Carrie and she was like, ‘I thought you were calling about Mikki.’  I asked, what about Mikki?  Mikki had been a friend of mine from the fifth grade on.  We weren’t close but we were friends again after all these years on Facebook and she looked to have a nice life.  She was found dead on December 29, 2021.  The cause of death is still pending but it is thought, by some of her friends, that it might be suicide.  What a weird coincidence of timing.  A horrible one.  She had children and grandchildren, and I don’t know her state of mind, but I can relate.

On Tuesday, January 11, 2022, I finally had my MRI, with contrast.  Within half an hour of me going home, my doctor (not the nurse practitioner) phoned me.  He sounded excited, agitated, and in a tone of ‘better get on this quick’ he told me that he was referring me to specialists.  They had found a mass in my brain.  It was on the right side in the front lobe (which, if you google what that area does, explains a LOT of my behaviors over the past two years).  It has lesions in my brain and cysts around it.  It also explains the headaches I’ve had for two years.  Almost always behind my right eye and forehead.  It hasn’t been fun and now, I know why.

On Wednesday, January 12, 2022, I went to see a specialist in Wausau, WI.  He told me that not only was the mass in the middle of my brain but showed me the MRI.  In one picture, it looks like a starburst.  In another, it looks like a white nugget (not of gold, I assure you).  It wasn’t anywhere near the front cortex.  It’s almost smack dab in the middle, the area that controls your vision (headaches possibly explained).  He wants to send me down to Madison, Wisconsin because that is where the University is and (according to him) the best surgeon in the country who handles this sort of brain mass.  That’s about a two-hour drive one way, not too bad. 

So, the problems I had with the booster turned out to be a good thing, because that weird after-effect where I went numb on my left side (see the previous blog), caused an even weirder reaction.  I’m calling it brain-quake (if this catches on, I want credit for it).  It’s like an earthquake only the only thing moving is something inside your brain – – or, so it feels.  You don’t get dizzy, it’s not vertigo, you don’t get disoriented, but you feel ditzy as all get out, and only for a brief moment.  This may be the reason why, over three weeks after the booster, they found this mass in my brain, because of the symptoms I was still experiencing.

A funny side note, they were concerned about my sinuses since I seemed to have inflamed them. I explained I’d been crying since Saturday when I found my friend of nearly 40 years had died and on Sunday a friend since the 5th grade had passed. (and, I didn’t need to add that on Tuesday, finding out about the mass). So, that probably did a number on my sinuses with all the tears shed and the nose being blown time and again.

Before I go, they want to take scans of my chest and stomach, to make sure I don’t have cancer anywhere in there that may have metastasized into my brain (oh joy).

The fog-brain, the words that are on the tip of my tongue, the sleeplessness and then fatigue, and other symptoms I’ve been bitchin’ about for two years, those are all from the long-term Covid effects.  They still don’t know why, and they don’t really know how to treat it or how long it will react.  The distractions, the lack of motivation and concentration, all that may remain until they can find something to help restore those aspects of whatever is wrong with me. 

Anyway, I wanted anyone who reads my blog to hear what is going on and why, from me, rather than whispers through social media.

2021 Health

As many of you know who follow my blog, I had covid right at the beginning of the pandemic.  That was January 2020.  The doctor I had then refused to test me, after all, ‘there couldn’t POSSIBLY be covid in Milwaukee at that time’.  Um, hello, everyone knows Milwaukee is a 90-minute drive from Chicago that had some of the highest numbers right off the bat with an international airport that brought people through its hub.

Something I noticed right away was the fog-brain that affected me in so many ways.  I couldn’t concentrate.  I couldn’t write.  Getting out the Lesfic Bard Awards was such a chore.  Doing accounting was nearly impossible.  Even now, two years later, writing this blog has taken me two days (no friggin’ kidding).  Everything is on the tip of your tongue, but you can’t get the words out when speaking, concentrating and getting it out on a keyboard, just as bad.

I’ve written about this phenomenon previously on my blog so I won’t repeat too much of it here.

Fast forward to March 2021, I had my ovaries out because of cramps I kept getting (it didn’t stop the cramps, unfortunately) and this affected me in ways I hadn’t completely anticipated.  I knew I’d go into full-blown menopause, but I didn’t think of the highs and lows, the night sweats, the way it would affect my wonderful brain. 

I’d always been proud of the brain that the fates bestowed on me.  The capacity for recalling minute details that were useless facts for the most part but that could be put into books and stories at will.  Now, things tend to still be there but take deliberate recall, and a lot of the time I can’t get them out into a book much less this blog.

By April the depression was getting to me.  By May I found myself having suicidal thoughts and I made sure to make my doctors aware of them.  My nurse-practitioner suggested I commit myself to a mental health facility.  What she didn’t realize is for me to reach out for help, any help, was a lot to overcome given my upbringing.  For her to make such a suggestion instead of just giving me the ‘happy pill’ I sought was abhorrent to me.  The surgeon who removed my ovaries had stated that his office would help me ‘anytime’ during this transitional period into menopause.  They were absolutely of no use; I suspect because I reported his anesthesiologist for incompetence for administering narcotics when I clearly stated I had a bad reaction to them.  But that, is another story for another time.  They refused to help me at all, referring me back to my GP.

I determined that if I was to get mental health, out of the fog brain, that I was going to have to treat myself, find it on my own.  And, I did.  I found a supplement that took a while to build up in my system and clear enough of the fog brain that I was able to write Religious Experience and work a bit on other things, such as accounting and other books.  I still had these severe ups and downs from menopause.  I was beginning to realize the rage, the hot flashes, and what I determined were manic-type episodes, were my new norm.

In August I had a health check-up.  I have to take thyroid meds for the rest of my life because when I had cancer all those years ago, they accidentally destroyed my thyroid from the radiation therapy.  You do NOT want to mess with your thyroid.  It controls so much of your body that they still don’t even understand its full functions.  My nurse-practitioner told me I HAD to STOP taking the supplement I had found that had helped me clear some of the fog brain because it ‘might’ interfere with my thyroid meds.  Sigh.  Personally, I think they didn’t like that I had found something on my own that worked.  Still, I wasn’t going to mess with my thyroid meds which had taken years to find the right dose that worked.  And, just for fun, she attempted to trick me into committing myself to a mental health facility when I admitted I was still depressed.  That angered me.  After all, I was asking for help from the person I was supposed to get help from, all she’d done was write a prescription for muscle relaxants to help with my depression, yeah, like sleeping eighteen hours a day is going to help me get things done.  S M H.  I’ve pretty much lost faith in the medical profession.  Still, I knew things were still wrong, that my brain wasn’t working right with the fog brain, and I was seeking medical attention from the people who obviously didn’t know how to cope with the after-effects or long-term effects of covid.  I’d told them all this time and again and they had pretty much ignored me.

In December I was due to get my booster shot.  For some reason, it was difficult to get an appointment up here in the Northwoods.  I’d had Pfizer and the first two shots, no problem (that I recalled).  This third one though, WOW.  I was told at Walgreens to report ANY adverse reaction.  On the drive home from the booster, my tongue started to go numb, like Novocain.  That funny tingly sensation.  It spread to my jaw, down my neck, up into my brain.  My hand went tingly, my arm, down to my foot, then my whole left side was tingling.  I called my doctor’s office but couldn’t get through.  I called Walgreens and they were like, why are you calling us?  Call your doctor!  I tried again and got through.  They told me not to go into the walk-in clinic but get to the ER as soon as possible.  They emphasized that TWICE!  I drove myself, still tingling and going numb.  It’s only a two-mile drive from my village and as I was going over the freeway, I started having trouble breathing.  I really didn’t think it was a good idea to be driving myself to the emergency room, by myself.  I walked in; the tingling had gone completely to a numb feeling. 

I started to feel that Novocain feeling into the right side of my tongue, little feeder tingles like whatever was happening was seeking out new pathways.  My right hand started to tingle too, maybe even my right foot.  They hooked me up to an IV and the nurse who put it in, did a bad job.  I’ve had countless IVs over the years and I can tell the difference at this point.  It hurt!

They gave me a full work-up, asking stupid questions, the doctor checking to see that I wasn’t having a stroke.  I told them I wasn’t having a stroke.  I’ve had one before about 22 years ago and I wasn’t having things go limp, I wasn’t losing the power over my left side, it was just numb.  The tingling had gone away to this numbness.  They decided to do an MRI.  Then, because I refused to have a closed MRI (not because I’m claustrophobic but because they pinch my broad shoulders), they delayed it.  Then they decided to do a cat scan. 

Then they decided to do a simple X-ray.  All this of my brain to see if I had had a stroke.  By the time they stopped jerking me around, had all these monitors hooked up, and decided on a course of action, four hours had gone by and the numbness had worn off. They did tell me that normal reactions to the booster took two to two and a half hours. Mine had occurred within an hour, unusual. Glad I could be a percentage case for you all.

I got tired of waiting for them to do something, anything.  I’d been patient with all their stupid questions, including one about if I might have a penile implant.  I get it, they can’t assume anything in this day and age but I was amused that they have to ask everyone that question for the tests they were about to do.  After all, for all they knew I was transitioning.  Finally, I’d had enough and I rang for the nurse.  I asked her politely to remove the IV (which still hurt) and take off all the monitors.  I was going to leave.  Even if it may be against medical advice (which they didn’t say it was).  It took them forever to come in to remove all this stuff.  I was about to remove it myself when a guy popped in to FINALLY take me to my X-ray.  I told him no thank you, I was going home.  They came in soon afterwards to remove everything and I went home.  I took a nap and felt much better after all this hoopla.

Man, it was nice to feel 2021 coming to an end!