Infusion Complete

On Thursday, November 15th. And I am already feeling so much better. My most obvious MS pain, my spastic calf, is already rapidly abating. In fact that whole left side of my body, which tends to ‘tighten up’, is relaxing. How very nice! Even if the untightening process is anything but fun.

sweating the needle
Sweating the needle soon to arrive

 

I'm sure that flashlight has a hefty price tag!
finding veins with a sophisticated flashlight

Neat-o! Impending doom!

One stick only please!
Clearly the veinfinder works. ONE STICK!

Big thanks to the AIC nurse, Ivanna, for the single stick. With the skill of a guided missile she punctured my vein quickly. I ALWAYS appreciate a quick stick! THANK YOU!

 

It actually wasn't that bad.
And the reward: hospital lunch!

Food. Yummy food. Even hospital food is good when you’ve got a Tysabri drip going.

Around an inch
And it snowed!

Good thing the family truckster is 4WD (actually AWD)!

Bring On The Bac

Baclofen, that is.

I posted on Friday how I was feeling pretty good this Tysabri cycle.

That is until this weekend.

My leg – errr- calf is super tight and totally bothering me.

Sigh. It’s getting old. With absolutely no relief in sight, or even available to me. Except for manual muscle release – A BIG NO THANK YOU – at this point at least.

So it is waiting until Thursday for my Tysabri relief. It is hard to even think straight with the calf as spastic as it is,.

But, lets focus on the positive: My right hand numbness has mostly resolved. I’ll be getting my yearly MR soon and that’ll show what’s up with that. Hopefully nothing.

And back to the negative: I can’t get the knee right above to crack, which provides temporary relief from the calf. I just need it to crack for now!

C’mon Tysabri!

And it’s looking like I’ll be getting my green card in December!!! Finally after two years!

 

< 1 week until infusion

And I’m feeling much better this infusion period. I had to look on the calendar and to my surprise, my infusion is only six short days away. Wow, last cycle was horrible. I was feeling so run down and suffering from my MS symptoms that I just couldn’t wait to be infused with that sweet, sweet Tysabri. As I’ve mentioned so many times, shortly after the infusion I’ll start feeling better, but before I go on…

I need to apologize to the clerical staff at the AIC. I was clearly in need of my tysabri and my temper was very short. I was taking things the wrong way, and I got unnecessarily hostile (for me, no threats of violence occurred, I was just being a typical American on my last infusion – which is VERY BAD IN MY BOOK). For that I need to apologize. So I am. I am very sorry for the poor introduction I provided when I walked in during my infusion. I will do my best to keep my hostility to myself. And in all honesty, unless the MS takes a dive in the next six days, I believe you’ll get the normal cheery in public (even if, as per usual, I’m burning on the inside) Mike. I feel terrible for the hostility I provided during the last interaction, and I’ll be apologizing in person in six days.

So now that is out of the e-way, I can get back to the more pressing issue of how I can feel so different after each infusion. I believe it may be the ‘freshness’ of the Tysabri, or the person behind the scenes who is mixing (? reconstituting) the Tysabri.  Or something. Some infusions I’ll feel wonderful if not for the entire time, most of the post infusion time.

But last time, it didn’t feel as good as first. So perhaps it was the infusion before last? Shortly after my infusion I got a numb spot in my lip. Scary, yes, but no need for alarm – or I thought. As it went away I forgot about it. Then a couple weeks later, I got the ***** scared out of me. I thought I was having an attack or something, as my left hand started feeling as thought it was going numb. Seriously, one of my ‘issues’ I have from the MS is the numbness of my left hand (mostly in the fingertips, or at least that’s where i touch to test the numbness). All of my MS issues have been on the left side of my body thus far (right-brain issues). So when I had a problem on the right side of my body, I kind of freaked out. I sent a message to my Neuro via the patient portal. Of course, the doctor was not in, so I had to talk with one of the doctor’s partners or something (someone filling in for him that day, I suppose).  I did hear back from him on Monday, but thankfully the numbness started to ebb. It is mostly gone at this point, for which I am thankful.  Ill find out more when I get my MR and see him in December.

I’ve also been sitting on the doc’s recommendation to get a green card for a year-and-a-half, so I’m going to contact a dispensary and see if they can help with the application process. I always stall out on the application part.

Soul Not Sold

I haven’t sold my soul to the public, other than this site…that’s probably why there wasn’t an outpouring of support from the dumb and ignorant populace when I disclosed. Nobody cared. Life as usual.

But if you’ve sold your soul to the public and disclose that you have MS, you get an outpouring of emotional support from people that don’t even know you.

Take the most recent example: Selma Blair

No? You must be as out-of-popular-touch as me.

How about Montel Williams?Jaimie Lynn Sieglar? Jack Osborne?

So what do you have to do to be reached emotionally in this country? Sell your soul to the public?

Nope, not gonna happen. I’m doing just fine dealing with this on my own. I do not need the public’s support.

The public eye sucks, and all that watch are hypocrites anyway.  I don’t need their hollow sympathy.

Oral Trauma

Holy wow. And I thought a root canal was rough!

I’m not sure if I explained it before….a filling fell off my #14 molar a couple of weeks back. Went to the dentist to have Dr. J look. Nothing but bad news. Root canal AND gum lengthening.

I had, up until that point, had nothing more than a cavity filled. Which in retrospect is kids play when it comes to dental work. I’ve feared a root canal all my life, and finally had to face one. It was rough. But in comparison to the gum lengthening, it was nothing.

I thought I had luckily escaped the gum lengthening, which is a HUGE misgnomer, after Dr. Trinh (the endodontist) completed the root canal, he said that the gum lengthening didn’t appear necessary.

Cool, I thought. Save me from some oral trauma. That is until a week or so later when Dr. J’s (regular dentist) office called me saying I see you had gotten that root canal, but you didn’t get the gum lengthening. To which I replied Dr. Trinh didn’t think it was necessary. The receptionist said, “I’ll check with the Dr. and call you back.”

After a few hours the receptionist called back and stated, “The Dr. feels gum lengthening is a necessity. ”

F**K!

No escape. So I made an appointment to return to the Mouth torturer in a few days. Dr. Trinh obliged by removing a portion of my jaw bone after cutting open my gums.

Wow. That sucked even more than a root canal. big time. Let me put it like this:

After the root canal Dr. Trinh suggested tylenol or ibuprofen for the pain. The pain lasted through the evening, but was pretty much OK after that.

After the gum lengthening Dr. Trinh wrote me a prescription for antibiotics, antibiotic mouthwash, and norco. And thank goodness. I don’t think I could’ve made it through the first two days without it. it is still kind of iffy, and I’m only taking a half a norco at this point. Which is important as he only prescribed 12. I miss the good ‘ol days when you can spend your recovery period in an opiate derived haze, but society can’t handle their sh*t so we all have to suffer.

Like I said, HOLY WOW. That sucked! Big time. But I no longer fear the root canal like I did before. Just gotta set the bar higher.

Finally Infused

I received my Tysabri dose yesterday. On a Thursday. Thank goodness, as I was really jonesing for my dose. My body felt like it was starting to give in to the MS. Tysabri keeps that from happening. I need my stuff! And not a day late.

And I hate needles

I need to say, though, having my Infusions on a Wednesday at the AIC seems to have made a big difference. In the overall happiness of the AIC staff anyway.  Unless they all just got chewed out by upper management, or something, I don’t know. Everybody from reception to one of the best AIC nurses just seemed to be off, or wanting to give me flak, or something. It wasn’t that the experience was terrible. I was able to make it through it all with little trouble. But it seemed like the whole AIC was aimed at making sure my experience wasn’t as good as it could have been. Maybe they’re sick of seeing me after almost ten years? Everybody in this world seems to have a point at which they’ve had enough of me. Maybe they were having an off day. Perhaps I was. It was weird.  What felt like a home to me did not feel that way yesterday.

To make it worse, some (likely cancer) patient took my Wednesday appointment again. GDMFSOB!

Anyway, back to the  good drug. It was administered. I’m already starting to feel better, but this one could take a few days. I was feeling pretty worn out post-infusion yesterday (hence not posting about it until today). Wasn’t the worst lethargy I’ve experienced (that was the first few infusions), but it was up there. Hopefully that means It’ll work even better? Not likely, but wishful thinking.

[email protected]

 

And a few people obviously know my Infusion schedule, after just a couple of views everyday for however long, the visitor count jumped to over 30 yesterday. It’s the AIC patient’s fault for taking my preferred appointment time!

the view from my infusion room, Schaumburg in the distance

 

And something you never want to see from your infusion pump.

Good thing the pumps realize that instead of pumping your veins full of air! Sorry for the vertical video, but it was an instant and the pump fit better in that perspective. Plus, if I landscaped it, it would’ve shown all my personal info. AND YOU DO NOT WANT THAT ON THESE HERE INTERWEBS!

SIDE NOTE: My research indicates that it’ll take >50ML of air in a line going into your vein to cause a problem. They did note that  20ML of air rapidly infused into an IV line can cause emboli (that’s the term they used). Information I gleaned from someone’s opinion on allnurses.com.

 

Guh

I should be post infusion right now. Instead I have another 24 hours of suffering (actually around 14 hours at this point in the evening).

Damn cancer patients. The plight of getting infused at an Ambulatory Infusion Center.

Oh I Need My Ty

Bad. Actually. Badly. I need my Tysabri badly.

It was really warm midday. Nothing excessive, but up there. Especially in the baking sun. Which I was in while I was playing with Kei before the kids started getting home from school. We were playing hard – or at least it seemed to me. I was hot. I couldn’t cool off. Then it started happening….

I don’t know wheat to call it, but my vision was disturbed. It was hard to look at my phones keyboard. The specific key on which I was focusing was hardest to see.  It was weird. Really weird. It was, and this is the best way I could put it, like I had a tear in my vision. Or a jagged line of light, mostly concentrated in my left eye. Makes me think my right brain is the most afflicted.

I’m not sure what happened, but I’m betting it was the Multiple Sclerosis exacerbated by the heat. After a thorough freak-out in my head – a lot of what ifs, I sat down in the shade. Aside from getting eaten up by mosquitos – chilling in the shade wasn’t getting rid of the visual disturbance. So I went and filled my water bottle and soaked my cooling towel. Chilled out and tried to relax while I hopefully cooled off.

I eventually did, and the vision problem subsided. As always, it is the fear of possibly having an attack that scares me most. A lot of what ifs where going through my head during that time.

Now so very clearly I need my dose of Tysabri. Stat like!

I have to wait until Thursday for my dose. Wednesdays were taken. Two months out. Damn cancer patients : P

The revenge of the 80’s

It seems as though my extravagant youth has caught up to me. I had a huge  – likely unnecessarily large – filling in what I believe to be my #14 molar. It was a gargantuan filling. You’ll be impressed if I ever can find it and take a picture.

Let me get to last week. My kids were binging on starburst, which due to my younger two have to be unwrapped and given to them. Whilst unwrapping and distributing starbust, I unwrapped a cherry one. Thought to myself, I’m kind of hungry, I could use a little snack. Popped in my mouth. Started chewing.

One of the worst decisions I have ever made.

I realized that when I was chewing and felt a significantly sized piece of metal in my mouth along with the starburst.

When I first got it out, I thought my tooth had simply decayed and disintegrated and that was like a portion of the broken tooth. Looked really nasty. But I’m happy to say I did not panic. Didn’t really bother me much.

I did, however, realize that this was probably serious. So I took it upon myself to ring the dentist and make an emergency appointment. Unfortunately it took almost a week due to my procrastinating* and my dentist, who is wonderful, not having convenient office hours for my particular situation. Like I said I wasn’t in pain…physical at least. Sweating it was kind of hard. As it most usually is the worst part.

Anyway I got into the dentists on a Monday, and I could tell by her reaction as soon as she walked into the room.it wasn’t good. It wasn’t. At all. It was terrible. Pretty much my worst dental nightmare.

A visit to the endodontic studio.

Don’t understand? Lucky you. Let me put it this way:

Root Canal

I get home after stopping at the pharmacy to pick up the antibiotics my lovely dentist was nice enough to prescribe. And I break the news to my loving wife. I am filled with worry about the procedure I now have to face.. Most of the people I’ve heard talking about root canals are usually horror stories. My wife tells me they’re no big deal. My mom tells me they are horrible. My dad says no big deal. The internet, as expected, is nothing but horror stories. The anxiety is what destroys you!

So Wednesday arrives. I get to the studio early. Wait for about an hour to see Dr. Trinh. I was so nervous it was indescribable the amount of anxiety I felt. I sit down in the chair. Dr. Trinh goes over my options. One of which is to root canal the two molars surrounding the damage molar. He stated that the teeth have irreversible plaquitis. I declined, slyly stating that we should just go with what has already been planned.

He then injects me. The first round wasn’t too bad…like shots from a dentist. But the second round – I still fell those to this day. My jaw is still sore. Whatever he used really worked though. As I did not feel a thing during the entire procedure.  There was A LOT of drilling I could hear – which occurred to me today I did not smell that burning smell that is common during fillings at the dentist. But the pain was absent.

A bit under two hours after Dr. Trinh started, he was done with my root canal.  What a relief. It certainly wasn’t fun, but it also wasn’t the terrible experience I was expecting. I suppose going in with the lowest possible expectations really doesn’t set a high bar for a root canal. So high marks to the crew at Renovo and Dr. Trinh.

And then after I got home the numbing agent wore off and the pain set in. It was pretty harsh for a few hours. And all Dr. Trinh suggest was ibuprofen – NO – or tylenol. Wasn’t good enough for the few hours after I got home.

And hopefully when I follow up with Dr. Jaffrey she’ll have better news about those two molars that Dr. Trinh said would have to be canaled. C’mon conservative dentistry! I should expect for the worst, which I do, but I hope for the best at the same time.

*Avoiding what I ultimately knew would be a bad outcome.