I am insanely tired today which is a major bummer since yesterday was a pretty good day. I slept great so there is no reason I should be this exhausted other than the stupid MS.
Ok it was way too hard to type that tiny paragraph. It’s like my fingers won’t obey the signals my brain is sending them as I type.
For some reason, WordPress refuses to email me my comment notifications and pending approvals. I’ve checked the settings and they still won’t come to my gmail. Anyone have any ideas?
That’s all I have to type today. Check out audio of my crazy friends Amanda and Taylor as they unbox a four pound boa constrictor. Well I shouldn’t say they. Taylor is the crazy one but since it’s Amanda’s Christmas present , she can’t interact with the snake until Christmas so Taylor did it. Oh yeah, they’re both blind too.
Today has been the best day since I was treated with steroids last week for my MS flair. I decided to start the day with some yoga because for whatever reason my hamstrings have been so tight my legs burned when I scooped Jayden’s dog food in the mornings. The yoga felt great and started the day off nice and relaxing. I spent most of the rest of the day reading my book which had just gotten so good it refused to be ignored.
Now I’m writing today’s post, dreading what will happen in Ferguson tonight and in the days to follow. As if local sounds want to give me a taste of what it will be like there tonight, the police helicopter has been flying overhead and I hear sirens in the distance.
B has a news channel on in the living room and I hear snippets of the reporters talking over the classical music I’ve had playing in my den all day.
I just heard a reporter say we’re getting so close. I’m terrified for that city. Now they’re talking about schools and businesses being closed and a female reporter is saying it’s recklace to wait until after dark to announce the decision since it’s harder to crowd control after dark.
Does anyone really think it will be possible to crowd control in Ferguson tonight? Terrible. This is terrible. The media is sure in its element. This is like a hurricane to the Weather Channel.
My music is crescendoing. I can still hear the TV. The crowd is getting larger and larger. There’s a member of the KKK there?
The woman reporting has been reporting there for two months she says. It’s bound to be a larger crowd than normal, she says. No shit, Sherlock.
I’m scared for the people of Ferguson. I’d be one of the few locking myself inside. B has changed the channel to sports.
In news closer to home, we’re under a freeze warning for tomorrow.
My heart just isn’t in to writing this post. Is November over yet?
Should I keep this text document open until the announcement is finally read? B has the TV back on the news. I have Twitter open as usual.He said he doesn’t usually put the news on for stuff like this but he has a feeling this will be history. I’m like, ya think?
It is such a powder keg of racial tension how could it not be history. It already is history. All these shootings are history, joining one another to lead to this moment, this moment of people being fed up, of course it’s history. I can’t hear the TV now. The heater is running, white noise drowning out all sound other than the click of my keys and the violins coming from my speakers.
I’m going to post this now. My elbow is screaming at me, the steroid induced reprieve is fading.
Today is much much better than yesterday. Much. I’m making myself stay out of bed today since I need to start regaining some strength. I managed a shower not long ago and only got dizzy once. Score!
A few weeks ago I did an interview on Blind Sports Radio about my trip to meet the Rays. The interview was put out yesterday and you can listen to it here. I lisgtened to it last night. I couldn’t help but notice what book I mentioned when I was asked for a favorite book and what date I listened to it on. Also, I think I jinxed myself talking about steroids and Pringles haha! I lay there resentfully listening last night, remembering taking my prednisone taper with the Pringles and wishing I had the taper this time around. However today hasn’t been so bad. I feel more human.
I am having a really bad time of it today. Let me back up to yesterday though I suppose. So yesterday I posted really early in the morning since I got out of bed at 3am. I was looking forward to the last medical appointment of the week and anxious to find out about the next stage in my treatment.
the doctor ended up running late for my appointment since he does rounds at the hospital before going to the clinic and he had a patient stroke out in the ER. So Jayden and I sat in the exam room and I played iAssociate 2 on my phone. The nurse practitioner came in when they got there and told me I was negative for that virus that would keep me from taking one of the MS pills. I couldn’t believe it. I really thought that with my luck, I’d for sure have to do the infusion drug. I told her I was feeling dizzy and overall like crap, no desire to eat, forcing food down when the steroid hunger hit. When the doctor came in we just discussed treatment, not really how I was feeling after steroids.
I have to get an eye exame to see if I have macular disease since the pill he wants to put me on can cause that. I’m like raelly? So what? My eyes are broken anyway. I also have to have an echocardiogram and if I’m clear, then I can start this pill. I can’t remember what it’s called. A nurse has to come over while I take the first dose because it can make your heartrate dip.
So Anyway, I get home and remember I didn’t get a prescription for a staroid taper. In the past when coming off solumedrol I’ve taken a prednisone taper at home. So I call the MA and leave her a message. I didn’t hear anything and it was 4:30 so I call the office and explain I’m concerned about not having a taper so she gets on the phone an explains that my dcotor doesn’t do the taper.
So I’m coming off soumedrol col turkey and it’s not going well. I googled and everything I’m experiencing seems pretty normal for solumedrol withdrawal. I’m not happy about this. I feel like absolute crap. My arms and hands are weak. I hope the strength comes back.
Welcome to another episode oF *CROWD CHANTS THE WORDS* SLEEP! DEPRIVED! FUN! WITH YOUR HOST, RO, THE RAYS DUCHESS OF THE ARIZONA TERRITORIES!
I HAVE THE TIARA TO PROVE IT.
NO REALLY, I DO. I WAS SERIOUSLY TEMPTED TO WEAR IT TO MY LAST STEROID TREATMENT YESTERDAY. I HADN’T HAD THE ENERGY TO BATHE THE DAY BEFORE AND BLOW OUT MY HAIR SO I STUCK MY RAYS CAP ON YESTERDAY AND ALMOST PUT THE TIARA ON OVER IT. I THINK I HAVE EXPERIENCED A LITTLE OF WHAT IT’S LIKE TO BE IN A MANIC PHASE. I MENTIONED IN YESTERDAY’S POST THAT I LISTENED TO THAT GNARLES BARKLEY SONG CRAZY ALL THE WAY TO THE HOSPITAL. JUST ON REPEAT. THE DRIVER WAS A SPEED RACER TOO, SO IT WAS A SERIOUSLY FUN RIDE TO THE HOSPITAL. I KINDA WISH I HAD WORN THE TIARA.
Davis just informed me on Twitter that I was yelling. I hate it when I knock caps lock on and don’t notice it. Was I yelling in this post? Well, it would fit. I’m feeling crazy again this morning as the hours tick by. I don’t know for sure when I woke up. I try not to check the time so I don’t obsess but then I needed an ibuprofin and I always note the time when I take one since I take the 600mg pill and I don’t want to overload my kidneys. When I checked the time it was 3:00am and I had been laying awake for quite awhile. *groan*
So I lay there some more and then just gave up and got out of bed. I ended up reading through all my short stories here when I grabbed the link to the archives page to send to my new neuropathic friend. (His title. I like it.)
My writing schedule has been killed these last two weeks with all the medical stuff that came up so suddenly. I don’t know how I’ve managed to get a post up every day for NaBloPoMo. I’m sure the last few don’t make much sense. At least this morning I’m co-hearing ok that’s me trying to use Dictate on the Mac to spell a word and it’s just not working. Coherent There we go! Oh, it’s ent not ant.
Did I already write that I see the neurologist today? Maybe I’m not coherent if I already forgot what I’ve written. I’ve mentioned it on Twitter so that might be where I wrote it. this is why I shut Twitter down when I’m working on the novel haha.
It’s only 5:12. My alarm is going off in just under two hours. At least it’s not a three hour infusion today with travel to and from the hospital mixed in. I’m hoping to talk to my friend Shupa this afternoon after I get home. I’ve been drawing on her strength the last few days without her knowing it. Sometimes you just reach out through the ether to people who understand what you’ve going through.
I can’t quite seem to get silly like I have in past sleep deprived posts. Hmmm.
You know what sucks? Steroids. usually they’re awesome. this go round? Not so much. usually they increase your apetitie. Oh God I can’t type that word hahaha. Apetitie. What? Ok is a brain lesion effecting my finger nerves? Appetite. Ok had to type it super slow. Anyway, usually food is awesome right? I love food. And in the past on steroids when the hunger would hit and it hits fast, it was fun to wolf down food and appease the hunger monster. I mean it comes on FAST. It’s like, you better feed me now bitch, or there’ll be hell to pay. but yesterday? Hunger hit, had to eat but the thought of food was disgusting. I had my usual lunch at about 3pm after I got home and had to clean up cat mess and it was like forcing down my turkey and radish sandwich that I usually love. Then I went and got a light massage, therapist going easy on me just to help relax the muscles but not exacerbate anything. I had told B before my massage that I had no idea what I might want to eat after so I’d just make PB & J. I mean one can always eat PB & J right?
When I got home I decided I wouldn’t eat. But then the hunger hit and there was no choice. I had to force down that PB & J. I am not enjoying this.
My vertigo is pretty bad. I think if my eyes worked, I’d be noticing some vision issues. It’s hard to explain what I feel since I can’t see, but I feel my eyes trying to do something. It reminds me of the nystagmus I had as a kid. That’s where your eyes vibrate. It used to happen to me at night when I turned the lights out to sleep. I’d have to turn the bedside light on and stare at it to make my eyes stop vibrating. That’s almost how they feel now.
So I don’t know how much success the steroids were. I don’t know if the doc will order another MRI. Several have asked me that. I didn’t have a second MRI in the past after steroids, but that was after being treated at the hospital, so who knows what Dr. v will want. I’m looking forward to this week being over but I am grateful I see him today.
I’m just plopping my hat on today. Don’t worry, I won’t put the tiara on. I am becoming one of those people who goes out with hair overdo for a wash. Nooooooo!!!! I just have not had the energy to shower after treatment this week and I can’t do it in the mornings because bathing takes all my energy. So…body spray it is! I hope I don’t stink. I don’t think I do. I haven’t sweat. It’s been really beautiful here weather wise.
So I’m just sitting here drinking coffee, flipping over to Twitter and carrying on conversations. The heater is on. the air from the vent in my den is so loud I have to adjust the volume of my screen reader when it turns off and on .
Oh no, the hunger wolf is prowling. I’d really rather have breakfast close to the time I’ll be leaving to my appointment but when this wolf gets hungry, it gets really hard to ignore, like a dog who is demanding attention. I think I only have one more bowl of Special K left in the box. *sob*
I’m going to get some green tea later with my prescription. My massage therapist said green tea is good to help the body adjust after high doses of steroids. I didn’t ask how he knows that. Maybe I should see if I can get ARod on the line for his tips. Bah ha ha! I assure you my phone is safe from harm. Even in my morning desire to rage, I didn’t have the urge to smash it like a bullpen phone.
Dammit hungry. Maybe I can manage a slice of bread with some peanut butter. Hmmm. Yeah that sounds good. I’ll go try and eat that and report back.
Ok, that was pretty tasty. I stuck a half a banana on there. Jayden was happy with this development. A taste of peanut butter and a half a banana? Nom.
Only problem is I forgot to take a Zantac this morning. Steroid heartburn sucks. Just popped one so hopefully it’s not too late.
I think I’m done rambling about nothing. I’m getting sleepy. Go figured. Three hours till I leave for the doctor. Tick Tock.
Today’s song of the day:
I really like how WordPress handles youtube videos now. Just plop the link in and WP does the rest.
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.
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
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!
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.
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!