Category Archives: NaBloPoMo 2014

Take your Benadryl with your Solumedrol so you won’t go quite as craaaaaazy

So if any patient with MS stumbles across the post and you are about to go in for a solumedrol infusion, when you arrive for your treatment the nurses might hand you some Tylenol and Benedryl and you might wonder what it’s for and the nurses will tell you it’s what the doctor ordered but you can refuse it if you want.

If you’re like me, you’re probably going in for Solumedrol because your MS is flairing up a bit and you’re probably sick and tired of being sick and tired and you know the steroids are going to bring relif from your body aches and give you more energy than you’ve had in forever so the thought of taking Benedryl is abhorrant because everyone knows that crap knocks you out right?

Sorry this thing is full of typos. I just got done with four days of going into an infusion center for meds and I came home to cat shit all over my bed. Do you know how not fun that is to clean up when you’re blind?

Anyway, trust me on this, dear MS patient. Take the Benedruyl. The doc probably ordered two, you ccan try just one, today I took both because yesterday, during my third day of treatment, I got anxiety so bad they kept having to stop the infusion.

Steroids can make you crazy. They didn’t for me the first two times I had them but those were times of deep stress and duress. This time I went in relatively healthy expect for the MS flairing up so the steroids did number on my mental health. I’ve also got an anxiety disorder now that I take daily Lexapro for so the general consensus is that the steroids flaired up my anxiety bad.

This morning I was so nuts I felt like Carrie from homeland. I asked my mental health professional boyfriend is this what’ it’s like to be bipolar because yesterday I just wanted to sleep and this morning I was weepy and wanting to walk around raging.

I took the Benedryl today. both of them. And I zoned out, mildly sedated, listening to Josh Groban while the Solumedrol infused. I still feel sluggish now but it’s far better than raging, let me tell you.

I’m done now. I see the neurologist tomorrow and I’ll probably get a prednisone pill to taper off at home. Oh, pick up some Zantac too. Take on in the morning before your breakfast, and eat something for breakfast before you get your infusion. Take another Zantac before dinner. Trust me, steroid heartburn SUCKS.

Ok, that’s it. I harte that this crap has happened during the NaBloPoMo because the last thing i’ve wanted to worry about it posting every day but dammit, I must hahaha. O crap I’m feeling crazy again. I listned to that Gnarles Barkley song all thwe way to treatment this morning.

Let’s see if WordPress embedded that.

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Filed under cats, humor as coping skill, Jayden, mental health, NaBloPoMo 2014, spoons, youtube

Bad treatment day

It’s now several hours later and I’m at home in bed. B picked me up from treatment and I went right to bed. I didn’t sleep but that’s not surprising. I never nap. Hopefully I’ll get a good night’s sleep tonight. I still don’t feel right. Did I write bove that the consensus is the steroids were cuasing my anxiety to ramp up? I’ll work hard to morry to master it. Just one moe treatment. Then a visit to the neurologist on Friday. It’s like a part time job of medical appointments this week. Praying tomorrow goes better. Guess I jinxed myself yesterday.Ok, Im at treatment and it has not gone well today. We’ve stopped it a few times and think what’s happening is I’m having major anxiety from the steroids. I’ve gotten a gram of solumedrol over the last two days and today and that’s a huge bombardment of steroids on the system. I never had a problem before, but I’ve since developed an anxiety disorder so what we think is happening is that’s flairing up. Yesterday I had some flushing in my face that I didn’t notice until one of the nurses pointed it out and then my face felt hot. That happened again today only this time there was headache and neck pain with it. I got close totears several times and I’m seriously confused not confused, what’s the word I’m looking for. Maybe I am confused. Fatigued. Seriously fatigued today. Didn’t sleep well last night. The nurses are trying to get in touch with my neurologist but he’s not in town right now. They said this isn’t anything abnormal. It certainly has not been fun though. So I thought I’d write a post and see if I can distract myself. Typing isn’t comfortable though. And I’m feeling super sleepy again. Have just under an hour to go. Must just get through it. I think I’ll try and go listen to my book and see if that can distract me enough. B might be picking me up so I don’t have to wait on paratransit. Just want to get into bed. Vn

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Filed under NaBloPoMo 2014, spoons

At one point he peaked through the hedge at the field behind his and there stood Michael Jordan!

You know, I could go for steroid infusions every day. There is something comforting about other chronically ill patients and the nurses who care for us. We’re all a rather kooky lot. Everyone at treatment the last two days have been in good spirits. They all laugh easily and share stories openly. My nurse is a riot and is very helpful when my treatment is done, helping Jayden and I get outside to his relieving spot and getting me settled to wait for my ride. It’s been beautiful the last two days so Jayden and I get a good hour of fresh air and he bathes in the sun.

When we got to the hospital, we went to the volunteer desk like yesterday to grab help to the infusion center. An older gentleman exlaimed, “I’ll take her! What’s Sparky’s name?” I could hear a female volunteer asking the man if he was sure he knew where he was going and he assured her he did. As we walked he explained that he used to come do some sort of charity work for the patients at the hospital and it had been awhile since he had done it. He said it felt nice to be helping someone again. We walked passed infusion and he read a sign that said imaging.

“Oh imaging, that’s the same,” he said uncertainly.

“I don’t think they’re quite the same,” I said, hiding a smile. He turned us around. He had passed infusion. When we walked into the right place he said, “Is this the veterinary clinic?”

Haha! That was a good one. the nurses took me to my same chair. My steroids had already arrived from the pharmacy so they went right to work. Another nurse besides Christy started my IV. Neither of them hurt at all.

As I got settled in, the daughter of another patient was going to get coffee. I said I didn’t have enough coffee in my bloodstream yet and she asked if I’d like coffee. I hesitated, having limited my fluids like I did with Jayden, but then she said the magic word, Starbucks. I checked to make sure I had some cash and then asked for a pumpkin spice latte.

There was something oddly vacation like to reclining in a chair, dog at my feet, friendly conversation around me, sipping a pumpkin spice latte.

I don’t know how conversation turned to baseball but it was the best baseball talk I’ve had since I was in St. Pete. The man to my left told us that he retired for a senior baseball league here in Arizona about five years ago. He played center field. He had never gone out for baseball professionally because when he graduated high school in the seventies, he was only five foot six, one hundred twenty pounds. So he played soccer and joined this senior baseball league in his thirties. He said he played with several retired major leaguers. The rule for the senior league is that one must be retired from MLB for three years. I was just riveted, on the edge of my seat listening to his stories.

One story was about a game he was playing on a practice field in Phoenix years ago and minor league guys were on the field behind his playing winter ball. At one point he peaked through the hedge at the field behind his and there stood Michael Jordan!

I got around to talking about my St. Pete trip and when I told him I threw out a first pitch he exlaimed, “presidents do that!” He said he was going to tell all his friends he was at treatment with a girl who threw out a first pitch haha!

We got around to talking about writing and among his many jobs over the years he taught english composition. We laughed about the good old five paragraph essay since I credit all my writing experience to Mr. Heintz and the five paragraph essay we worked so hard for me to perfect so I could win a medal in the essay competition in Academic Decathlon. I placed fourth. fourth! No medal.

Anyway, when I told him I hope to publish he said don’t think about publishing, just write something every day, let it flow from the heart. He gave me his email addres so I can pick his brain about where he lives east of Tucson since I want to drop my fictional town out that way. He also wants a sample of my writing. I’m just trying to decide what to send. My first few chapters of the YA novel, one of my short stories I’ve published here?

Treatment was entirely too much fun, I gotta tell ya. The other patient who was there and sleeping through most of it was ninety-nine years ol! he perked right up when we talked baseball though.

Too much fun! I can’t wait to go back tomorrow haha! Two down, two to go. I feel fantastic today! I got home and decided I wanted clean sheets on the bed so I switched them out and decided I want to order another set of percale sheets. Those were the clean set and I just love the feel of them over my microfiber set. I can’t wait to go to bed tonight. The day isn’t over though, I’m going out for Pho for dinner! In fact I don’t have too much time before my friend gets here so I’m not going to edit, just post. Life is good!

Oh I almost forgot something cute I wanted to write down. While I was waiting for my ride home, I heard a mom and kid walking up towards the hospital, the kid saying something about an alligator. The mom said, “yes, we’ll ride the elevator.”then the kid made up an elevator song. How adorable is that? I then wondered if the little song would become a memory device for reminding the kid what the elevator is called. Not alligator haha. I love it!

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Filed under baseball, fellowship, gratitude, Jayden, NaBloPoMo 2014, spoons, wow, writing

I don’t feel like entering a title thank you very much

I had thought I’d write today’s post from my steroid infusion treatment but I ended up just mindlessly playing on Twitter, talking to other patients, petting Jayden or reading. Today went well. I was dropped at the main entrance to the hospital and a volunteer took me to admitting where I was checked in by a very nice and acomodating I can’t spell that and don’t feel like looking it up woman. I’m just writing this howe ver it comes out. My body has energy from the steroids but my mind is still very foggy and tired.

The admitting lady took us to the infusion center where I met the nurse who’ll be taking care of me these days. Sh is very nice and fun. She got me hooked up to my steroids and was nearby if I needed anything. I got settled in to wait.

I feel pretty good as far as body aches go. Steroids make pain flee as if from a nasty storm. My shoulders are a little achey from wearing my heavy backpack and from sitting on a hard bench outside when I was done and waiting for paratransit. It was a lovely day outside so Jayden and I enjoyed the fresh air, listening to passing conversations, hearing people’s reactions to my dog, the kids are always the best. Doggy doggy! One said doggy! Oh a guide dog! Lots of smiles.

There was some delicous smelling food that met my nose on the breeze from time to time that awakened my steroids induced hunger.

Finally paratransit got there and it was a dirver I’ve had before so we chatted companionably on my way home. Poor guy, as I was bording he asked how I’ve been and I said, “well, you are picking me up from a hospital.” Usually I bite my tongue to those kinds of questions but it just popped out. There was a cringe in his voice and he said he hates when he does that. I assured him I was just there for outpatient treatment and that I hadn’t just gotten discharged from a lengthy stay.

When I got home I scheduled my rides for the rest of the week, fed my starving stomach, took a shower, fed Jayden and now B is home and I’m typing this.

My body could run sprints but my mind wants to curl up with a cup of tea and my book.

Tea? Yes I said tea. Sometimes that’s what I crave over coffee.

We just ate dinner so now I’ll post this and relax before tomorrow’s treatment. Tomorrow night I get to go out for Pho with my friend Robin! Yummmmmm.

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Filed under coffeeholic, Jayden, NaBloPoMo 2014, spoons, twitter me this

Can’t think of a title. Blame the cogfog.

Cranking out today’s post this afternoon since I already know I’m not going to make it into my den and computer and I don’t want o leave it for later when I stretch out in bed like I did last night.

I am hoping, hugely hoping, thatI sought neurological care in time and that Dr. V caught this MS relapse in time for steroid infusions this week to stop the progression. When I was first told of the new lesions and that I was in active relapse, I didn’t think I ws having any symptoms, no more than my usual fatigue anyway. Yesterday I noticed just how stiff and weak my left leg is and my right foot too. And today, dizzy spells galore. Is it psychosomatic? I suppose that’s always a possibility.

My iPad and bluetooth keyboard are working well enough for couch/bed days, thoug I feel much more limited than I am on my Mac. I wish I could buy a Macbook Air for couch days.

I’m going to see what I can learn about controlling iOS with my keyboard while I’m hooked up my steroid drips this week. I wonder if the infusion center will ahve wifi. My hotspot might come in handy.

I’ll write tomorrow from the infusion center if all goes as planned.

Oh wait, not done yet, welcome to the world, baby boy Longoria! He was born yesterday, unfortunately while Evan was in Japan on the Allstar tourHe watched the birth via Facetime. Technology is so cool! His fiance tweeted not long ago, thanking everyone for the well wishes for Nash. So I’m guessing they named the baby Nash. Nash Longoria? I like it!

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Filed under apple Inc, evan longoria, NaBloPoMo 2014, spoons

A post from the comfort of my bed

I don’t know where the day went. I slept like a log last night and yet I’ve been so tired today that I stayed on the couch with Jayden reading my book, half an ear on the Wildcats game, asking B about the rules of football.

I kept thinking about the post I’d need to write and I almost decided to throw in the towel on this year’s NaBloPoMo, but I’ve managed to post every day in November since 2008 so I decided I could post from the WordPress app while laying in bed later. It’s now later. Soon I’ll take Jayden out for the final reliving of the day, change into my nightclothes and roll over to cintune reading. So I’m cranking out a post rife with typos I can’t easily fix since I’m using my iPad. This works fiarly well for lounging in bed or the couch but man do I want a Macbook Air. A girl can dream right? I just can’t do the things I can on a Mac in iOS. I know they can be done I just haven’t learned. I should learn.

Maybe I’ll learn next week at staroid treatments since I’ll have hours to kill.

Ok, time to post and go back to zoning out. It has not been a good physical or mental day. Monday can’t come soon enough.

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Filed under Jayden, NaBloPoMo 2014, spoons, sports

I’m totally cheating and just linking to last year’s post

I’m just too exhausted to write about a book and grab links and update the book review list and do any writing about my day. It’s been a frustrating week with all the medical stuff and I’m just tired. So I’m cheating. Last year’s post was interesting at least. I just read through it an the comments.

TGIF.

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Filed under NaBloPoMo 2014, on this date, Uncategorized

“White Trash Zombie Apocalypse” by Diana Rowland – narrated by Allison McLemore

Hi School Zombie Apocalypse!! Two exclamation points, don’t forget the two exclamation points. I imagine this movie like a Sharknado with zombies. Hmmm, Zombnado?

Wait, is this a post about a movie?

Well it’s a movie in the book, yes. A zombie moving is being filmed in Angel Crawford’s home town and she can’t help but enjoy watching the fake zombies shamble around, that is until they are no longer fake zombies but real zombies after her. Oh yeah, and she has to take the GED test thanks to her probation and the stupid rain just won’t stop.

Turns out a lot of rain in Louisiana is a very bad thing.

There was a scene in this one that had me in tears and when I told Diana Rowland that on Twitter, she was very happy. Pssst, it’s us writer’s goal to make you cry.

There’s only one more WTZ book to review this year. I love these books! Hey, got any pudding?

Rating: So good!

“White Trash Zombie Apocalypse” at Audible

My schedule next week for my steroid treatments isn’t yet confirmed and that’s kind of bothering me. Dr. V’s MA said I’d hear from the hospital but I haven’t yet. I called the MA today and left a message just following up since it’s the end of the week tomorrow and I’m supposed to start treatment on Monday. I don’t know about you, but when I need treatment to calm my brain lesions down, I kinda want to know it’s scheduled good to go, you know?

I had a woman come today and clean my house. That was very very weird. When we moved in here I had to admit to myself that I didn’t have the energy to give it the good deep cleaning it needs. It was clean when we moved in obviously, and while I had hoped to just keep that up on my own, it wasn’t going to happen. It’s a very strange feeling to be chilling in your house while another person works hard to clean it. She’s sort of the family cleaning lady, having done my uncle’s house for years and Gamma’s house for the last few years of her life. Now she’s doing my house. Just need to get my dad on board to give up his cleaning haha!

I soaked in a nice freshly scrubbed bathtub this afternoon and the water melted away all my weird feelings. I need to spoil my body right now.

Now Playing: “Everybody Hurts” from “In Time: The Best Of R.E.M. 1988-2003” (R.E.M.)

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Filed under 2014 Book List, Audio books, family, Gamma, gratitude, humor as coping skill, misty eyes, NaBloPoMo 2014, spoons, twitter me this

“Mr. Mercedes: A Novel” by Stephen King – narrated by Will Patton – A Health Update and Dark Mood Lifted

It pleases me that the book I’m up to on the list is a book I hated because I’m in a dark mood. I’ll go in to that in the life part of the post.

This book sucked. Or rather it sucked as a Stephen King book. It just wasn’t a Stephen King book. It was a Michael Connelly book with maybe some more violence and blood, but it was not a Stephen King book with some scary town like Derry or a clown or a haunted hotel or a Yellow Card Man.

It was a detective novel. A detective novel with no mystery at that. You know who the bad guy is because there are chapters written from his point of view. There was literally no mystery, not for the reader anyway. Connelly has written from the bad guy’s point of view before too but I don’t remember feeling like there wasn’t any mystery left for me.

This book started with so much promise! I remember being riveted from the first but then it just went on and on and on and was boring. If Will Patton hadn’t been the narrator, I don’t think I would have finished it. I returned it to Audible. That’s how much I didn’t like the book.

I had jotted a note for myself that read: Blatant, not subtle, foreshadowing that goes nowhere. Lexapro. I remember the foreshadowing bit, thinking that was my mystery but no. I don’t remember what it was that I thought was foreshadowing, just that it went nowhere. I don’t really remember the Lexapro part of my note to myself. Thinking back to the character that might have applied to, I’m guessing my thought had been that Lexapro wasn’t used correctly or something. I can’t remember.

I think the story had merit. I just wish he had published it under his old pseudonym so I didn’t go into it expecting a Stephen King novel.

Rating: Meh

“Mr. Mercedes” at Audible

Now for my dark mood. I shouldn’t say it’s dark as in depressed dark, just dark as in crap that thing I was worried about actually happened. usually when I worry myself to death over something, it never comes to pass. I shouldn’t even say I was worrying to death because I really don’t do that these days being on the aforementioned Lexapro.

I was worried about my MRI results though, and that worry turned out not to be for nothing. My new neuro was point blank in telling me I have four active lesions on my brain which means the MS is active and we need to act now. As he was talking I could feel my eyes getting wider and wider. Four active lesions? How did I not have any symptoms? How had I not lost the use of a limb? My hearing? My ability to breathe?

He said sometimes there are no symptoms. Since I’ve been home with time to think though, there have been symptoms, just small ones. My last two MS attacks were kind of huge, losing the vision in both eyes, so little symptoms like fatigue lasting for days, right foot cramping, joints hurting to touch, I just wrote off as getting older and having a chronic illness.

Four active brain lesions. He was able to see my old lesions from the MRI without contrast, the MRI with contrast lighting up the new ones. Unfortunately he doesn’t have my old MRI’s to compare to be able to tell how old these new lesions might be. That doesn’t really matter, the point is now.

I’m going to start IV steroids on Monday to “calm the brain down” as he put it. While I’m not looking forward to spending hours at the hospital and dealing with paratransit, yay steroids! Steroids kill all my pain! Yes, they suck too because they make you really hungry and give you hot flashes but no pain you guys! No pain!

Me and my silver linings.

I see Dr. V again next week and he’ll have the results of the blood test that got drawn today. I was so afraid he would push the old interferon injections on me like my last neuro but no! He said there are much better drugs now. The one we’re hoping I can take is a pill but I was tested for some virus that fifty percent of Americans have and if I have it, I can’t have the pill. I’ll find out more about this mystery virus but for now, I can’t remember what he called it.

If I can’t have the pill, the next one he would want me to do is a once monthly infusion of some drug. Again, I was in such shock from the MRI results I didn’t think to jot down the names of this stuff. I think from here on out I’ll be doing voice memos of my doctor appointments haha! I don’t think I’d mind even the once monthly infusion of a drug as long as it doesn’t kill my quality of life like the interferon injections did. And I wouldn’t have to give myself a shot every other day.

Ok so wow, my mood doesn’t feel so dark after writing that. I’m just really grateful I decided to get back under a neurologist’s care when I did and so grateful my Rays Twitter Family friend found me this neurology clinic all the way from florida. Thank you, Nurse K!

I do need to own the fact that I have neglected my health as far as the MS goes since 2008 because of my resentment at the MS itself and the doctors and the medications that didn’t keep me from going blind. My stubbornness is the reason for these four active lesions. I had no idea B was worried until I heard the relief in his voice when he asked what the next step was and I said treatment.

I won’t neglect the MS again. That’s my solemn vow.

I wonder what next week will be like. I’m looking at it as an adventure for Jayden and me. And no pain next week! Weeeee! Oh speaking of pain, I got a prescription for ibuprofin since I take so much of it it was breaking the bank haha!

Oh, please cross your fingers that my insurance will pay for the steroid infusions I need. I’d be lying if I said I wasn’t a little worried about that.

Jayden was just barking in his sleep. I’m glad he’s good an relaxed. He was off at the neuro this morning and I think it was because he could feel my tension. I’ll make next week fun for him even if it’s not fun for me haha.

Oh, when B asked if there was anything he could do, I told him chocolate would be happy making. I expected a Hershey’s Bar or something. He got me a box of Whitman’s! Such a good boyfriend.

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Filed under 2014 Book List, Audio books, baseball, doc, fellowship, gratitude, humor as coping skill, Jayden, mental health, NaBloPoMo 2014, spoons, twitter me this

“Even White Trash Zombies get the Blues” by Diana Rowland – narrated by Allison McLemore

I don’t know how I managed to space the White Trash Zombie books out once I started reading them. This is the kind of series that makes you want to keep reading when you know more books are out there. I’m going to be sad when Rowland wraps it up!

In the second installment of Angel Crawford’s newly zombified life, we go with her as she tries to figure out who’s hunting zombies and whether or not her boyfriend is involved in the zombie mafia. Angel is also trying to learn more about her kind and the more she learns, the more questions she has. Oh and there’s that little problem of her probation. Needing to eat brains is the least of her worries in WTZ #2.

I looooooooove these books like zombies love braaaaaaaains!

Rating: So good!

“Even White Trash Zombies get the Blues” at Audible

Tomorrow I see the neurologist and discuss the results of my MRI. There should also be the result of the blood test he ran checking foe Devick’s, though I know that will be negative since it was ruled out back in 2008. I’m a little bit nervous about this appointment tomorrow since who knows what is on my MRI and who knows what sort of treatment the neurologist will want to try.

I have noticed much improvement since I took his advice and take ibuprofin on a regular basis for pain. as long as I don’t give the pain a chance to set in, I’m in pretty good shape. I’ll just need to test that when the humidity is high. I’m going to ask for a prescription for ibuprofin since I’m spending an arm and a leg on it.
Wish me luck tomorrow!

Oh, my friend Chupa and I made a pact last week to get back into regular exercise. I’m pleased to report that starting off slowly for me has worked well and I have an increase in energy since I’m pacing myself well. My den here in this house is such a great workout room!

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Filed under 2014 Book List, Audio books, doc, NaBloPoMo 2014, spoons, workouts