Well NaBloPoMo is over for another year. I can’t say I’m sad to see it go. This month was most definitely not what I had planned. But, MS doesn’t care about your plans.
November is ending on an awesome note though. My writing slump is officially over and I am hard at work on the novel. I’m rediscovering it as I revise and refine the zero draft I wrote so many years ago and it is a joy to see my characters come alive again. I wrote all day yesterday instead of just one chapter and boy did I pay for it in the middle of the night. I woke up in such pain in both shoulders I frightened B by creeping into the kitchen to heat up my heating pad thing. It’s my own fault for not stopping and stretching my muscles yesterday. In my defense, my writing pain is usually my forearms and they were fine so I guess the pain has shifted to my shoulders. I will be calling my massage therapist this week.
I’m hoping to continue writing posts here since I’d like to finish what I started at the beginning of the month with the book posts with life updates sprinkled in. I’m also very grateful the Roof and NaBloPoMo did what I hoped it would and jump p started the writing. Success! Ok, not going to edit, just publish. I’ve reached the cave scene in my revisions and I’m excited.
I spoke with my nurse today. Yep, I have my very own RN who I can call anytime I want. Luckily I passed a blood test that allows me to start an MS drug called Gilenya. I have to pass two more tests too but after speaking with the nurse today I’m pretty sure I’ll be able to start the drug even if I fail those other tests, they being an echocardiogram and an eye exam by a neuropthalmologist. If I don’t pass the heart test, then I have concerns even bigger than MS haha. the eye test is to check for macular edema since the drug can exacerbate that condition if I have it. I asked if it was really necessary for me to have the eye test since my stupid eyes are broken anyway so who cares, but the nurse , while she laughed, admitted she wasn’t sure. When she mentioned macular edema it made sense though, since edema is swelling so who knows if that would cause pain or maybe make my eyes bulge haha. That’s just guessing though. I’ll take the stupid test. I’m hoping to see the same neuroopt I saw when I went blind. He was fun.
Soooo, once I have those tests, which I’ll be setting up this week, the stupid holiday was really bad timing I’ll have you know, then I can set up an appointment for my first dose of Gilenya at my neurology center. I have to be monitored for six hours after taking the first dose since it drops the heart rate which can be dangerous for some people.
I’m pretty excited to get started on this after talking with my nurse. It’s been out for four years but when I first heard about it it was brand new . It’s had time to show what it can do and the results have been good. It’s not a cure for MS, but it slows the progression of the disease, making relapses less frequent. There also doesn’t seem to be too many side effects but the website is pretty terrible so I wasn’t able to read too much about it on there. It’s also the website to help sell the drug it looks like, so it’s not just cut and dry info. It seems rather kitchy in fact. I looked it up on drugs.com to get at least an overview of it. It looks like I’ll have to have my blood monitored to check my organ functions but that’s about it from what I could tell. I’m sure more will be revealed but the fact that my neurologist chose Gilenya out of the three options he presented is good enough for me.
I’m pretty excited to get started and just hope appointments can be set soon for the tests I have to take. I’ve been really impressed with all the medical people I’ve encountered over the last few months. None of them have scolded me or judged me for not being on a medication for the MS since 2008. I’ve explained to them all that when I went blind while on a medication, I got really angry that injecting myself every other day and having no quality of life on Betaseron didn’t keep me from going blind so I stubbornly stopped. At that time there wasn’t a better option than the injections that were popular for MS treatment.
I am very very happy with my medical team, that’s for sure! I also like that I now have the addition of two RNs. The nurse I spoke with today was just happy I’ll be going on something. I am, too.
I think I’m going to enjoy reading back on this month’s posts especially after the steroid treatments were started. There has been no planning for any posts except the plan to get caught up on book posts that I started at the beginning of the month. Then medical stuff happened and best laid plans went the way of the dodo.
Tonight I shall write about the disappointment that was the All In Bacon Burger from Applebee’s. When B called after work to discuss food, neither of us knew what we wanted. At first he said he’d come home and we’d order something but then he said he wouldn’t want to go back out once he got home so he’d just swing by Culver’s so I looked up the flavor of the day and it was cherry cheesecake and he said ew and I said I’d get it if it were strawberry cheesecake but I’m not a fan of cherries so he said he’d come home and we’d order out from Applebee’s.
The decision was easy to make once he read about the new All In burgers. They take ingredients and cook them right along with the ground beef of the patty. At first the mushroom swiss sounded good but then he read the bacon burger and come on, it’s bacon, cooked right into the patty and then topped with bacon. I hadn’t had bacon in a long time so I immediately tasted it in my mind. Bippity boppity bacon!
I tweeted to my friend Ricardo that I was excited about this bacon burger and then when I was done I told him I was disappointed. I asked him what I should write about for today’s post and he said, “the lackluster burger.”
I just could hardly taste the bacon. That doesn’t quite seem possible since it was cooked right into the patty but they put this barbecue ranch sauce on the burger and that seemed to like cancel out the taste of the bacon or something. And it was way too greasy, probably since there was bacon in the patty. And the bacon wasn’t crispy at all and it didn’t come with any condiments. It needed a ring of red onion. It was just a disappointing burger. You know the burger in Pulp Fiction that Jules eats and he’s like, “damn, that is a tasty burger.” This was opposite. Lackluster is right.
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