And a little child shall lead them

Okay, I went to school again Friday afternoon to put some finishing touches on my room so that when I wobble in on Tuesday, I just have some small things to do like reorganize my desk and hang up some more posters. I hadn't been working there long when I caught the image of people in the corner of my peripheral vision.

Normally, when someone is there that I'm not expecting or if someone creeps up on me like these two quiet people, I shriek or yell out with surprise. This time I was somehow able to refrain from that and I just slowly turned and welcomed the strangers in.

It was a mom and daughter coming to visit my classroom and me. This was my first "student sighting" since I've been back in the room this past week. They were both blondes and the little girl was so cute. I could tell she was super nervous, as almost all kids entering 5th grade in my building are for their first year here.

Chatting with her mom and with her made me feel more like a teacher again. I was SMILING during the conversation! Flipping smiling, can you believe that? I was chatting away and making these two feel comfortable in this new locale. I answered questions, I asked questions.

This little girl, unknowingly, helped me find a piece of my excitement in my world as a teacher. As silly as it sounds, this little child led me back to a place where I forgot I was successful and useful and happy.

I'm really glad those two stopped by on Friday. I needed that.

This is Tysabri

This is Tysabri. It's not an injection like the other MS meds, so there's no syringe. It's just a vial of liquid gold for many MSers. This is the stuff that costs thousands of dollars, a ridiculous amount of money but for many people this is their treatment of choice. This is often a treatment people move to after trying and failing some of the other MS medications. I've had my two strikes already with Copaxone and Rebif.

I'm hoping that I can afford this medication monthly, that I can find an infusion center with flexible hours and days that work for me and with me, and lastly, I am hoping that this will be like a teeny tiny time machine that will bring me back to an earlier time in my MS when I was feeling much better than I am now. I am hoping for the miracle!

I read another blog, several actually if you look over at the side of this page you'll see the list, and the woman aka Brain Cheese who writes it (who is fabulous by the way!) has been talking a lot about the cost of Tysabri and her insurance. To read more of this, click http://brain-cheese.blogspot.com/2008/08/i-heart-capitalism.html . There appears to be a wide spread of costs for the medication and the infusion center charges.

I know about the infusion centers' charges' variances which really can vary quite a bit. The drill is the same no matter where you go; they have to follow the TOUCH protocol which consists of asking specific questions and handing you the same information each time, hooking you up to an IV to receive the Tysabri, and watching you on-and-off for the two hours that you're there to make sure there are no adverse reactions to the medication. Yet each infusion location can charge all sorts of amounts to your insurance.

My neurologist's office wants my infusion done there, which makes sense coming from a medical perspective and a financial one on their part. However, they only infuse Tysabri patients once a month. One day a month, never on Fridays because they only are open from Monday through Thursday, and you must adjust your life around that one day.

The Tysabri company which is Biogen Idec called me yesterday after receiving the paperwork from my neurologist's office. We talked through a lot of information and I asked about the chance of not being cleared for an infusion on that "one day a month" and then having to wait a whole other month to be infused on the neurologist's schedule.

I had to explain this several times to the representative I spoke with before she could understand what I was saying and she said that waiting another whole month isn't following the schedule. No duh! She suggested we look into alternative infusion facilities which we found through the Tysabri website and there are about 5 others located around the same area, which is about an hour from my apartment home. They're going to look into the availability of days and times and their costs and compare it to my neurologist's office.

That's great, but she also mentioned that I may have to switch doctors if I choose another facility. Why is all of this so darned difficult? I thought the whole point was for me to feel better and do better with my MS. Isn't this all supposed to be about what is best for me, not what is best for my doctor? Sometimes I wonder ...

Strike two was Rebif ....

Strike two was Rebif. There's a syringe of it to your left. It's one of the three interferons. Those bad boys carry with them more baggage than a drug like Copaxone, not an interferon, in many ways. Interferons generally don't give you the ginormous welts that Copaxone can, though. Welts is a simplified word for site reactions.

Rebif came around in my life in November 2007 after my new neurologist saw my long-lasting Copaxone welts, felt them buzzing hot, saw the fevers, and looked at the latest MRI which showed more lesions. "Let's try something new," he suggested. I went for Rebif which is a subcutaneous injection, like Copaxone and Betaseron. Subcutaneous just means below the skin into the fatty area, not into the muscle unless you make a bad judgment call and get the muscle by mistake. Can we all say, "OUCH!" on the accidental muscle injecting?

I once injected into the muscle in my arm and knew it right away. It's a whole other type of pain that is much different from an IPIR. It hurts right away, usually bruises up nice, stays tender for a bit, and my muscle twitched for a long time with some spasms to let me know (for sure) that that was NOT a fatty area, thank you very much!

I chose Rebif because it was already pre-mixed (like Copaxone), had the smallest needle of the three interferons, was a three-day-a-week shooting schedule, and it was a subcutaneous injection. Avonex is a once-a-week injection into the muscle. Betaseron is an every-other-day injection but needs to be mixed at home before each injection.

Rebif, for me, caused an intensive increase in my depression level. I felt awful while on it, miserable and wishing someone would come drag me out of the hole I was in. I had my anti-depressant dosage increased to no avail. Then I went on another AD and later ended up increasing that to make me feel semi-human again.

Rebif also messed with my liver enzymes, sending those numbers through the roof. I think it was Rebif in conjunction with the myriad of other prescriptions I swallow to stay alert, be productive, fake feeling well, control any spasms, keep my legs from not being too restless, and to try and get to sleep and stay asleep at night which caused the spike in numbers. I was off Rebif for a while until the numbers decreased, some 4-6 weeks or so. I'm too tired to go look it up, honestly.

Then I went back on Rebif for a bit and I am now off it again. I seem to run constant fevers with the Rebif, low-grade ones of about 100.5 which make me feel cruddy. Yesterday was the first day when my body temp was only 99.0 and that was much better. I'm still battling some major depression, even with the meds, because this summer was a waste of sorts because of the heat. Since being on Rebif, my body has felt worse and worse with new relapses.

Regardless of Rebif or not, I am now almost completely heat-intolerant at this point in my MS. My body cannot stand any temperature over about 80 degrees and any humidity that is noticeable drops me to my knees. I spent almost all of my summer inside next to a fan or in the air-conditioned bedroom. I slept for hours and hours for the first four weeks of summer vacation because I am constantly exhausted. My legs have writhed with cramps and spasms I wouldn't wish on anyone. Spasms where my whole leg becomes immovable and the muscles on the back of my leg ripple and crackle so painfully that I can barely breathe. And these spasms last for 30 minutes or more at times. I'm noticing my MS getting worse and truly affecting my quality of life. No one else may see it but trust me, it's there and it's awful.

The Rebif is not able to beat back this messy stuff called MS. It just can't do it. I'm 37 and my QOL is nil. I'm tired beyond belief and not sleeping well again at night. I am stiff and my legs are heavy and hard to move. I probably could have used a dose of IV steroids over the summer but the message I received from the neuro's office was to hang on for another week and repeat.

Here I am on the cusp of full-blown work starting and I am dragging around like a zombie with really bad coordination. I need to head to the shower so I can get clean and then get to school and work on my room. I'm starting to look forward to teaching in my cleaner and more organized room, so that is a step up.

I just want my body to cooperate. I can't afford, in any sense, to be "off" when the kiddos walk in the door next Wednesday. People without MS or exposure to it, or some similar illness, generally can't understand that just the movements of daily life suck incredible amounts of energy out of our banks. I don't recharge after sitting down for 5 minutes. Sleeping eight hours isn't a dream; it's a necessity and that's still not enough for me.

So Rebif is strike two. I came, I tried, it just didn't help me beat back the MS. Right now the MS is winning.

Yesterday I drove out to the neurologist's office to fill out the Tysabri paperwork. I am hoping that this will be a viable option financially and that this will be the home run I have been dreaming of in my labored and interrupted sleep. On deck... Tysabri. If I was a betting woman, which I'm not if you know me, I would put all the money on Ty and let it ride. This HAS to work for me.

Strike one was Copaxone ...

Strike one for me was the MS drug called Copaxone. This was my first choice for an MS medication; a decision I made while I was in the hospital for three days awaiting the diagnosis that I had already made several months prior.


Yes, it's a daily injection but it doesn't carry with it any of the side effects of the other three injections which are all interferons. Interferons can cause all sorts of wonderful benefits such as free increased depression, buy-none-get-one-free flu-like chills and fever, and a 100% off sale on any joint pain and body aches. Who in their right mind would bypass those freebies?


Copaxone wasn't supposed to do any of that, so I was all for it. I injected my first time on Christmas Eve 2005 in my apartment before I went out to a friend's house. I didn't wait for the nurse the company so generously provides to come and show me how to do the injection; I had the handy packet of information and I had watched the DVD that they provided so I felt secure in doing my first injection all by myself. (As an aside, if you get diagnosed with MS and you're deciding upon an MS drug or drugs, you will receive more information than you could ever want, all packaged in a big binder type dealio with maybe a little carrying strap to make it look ultra-cool!)


I used the auto-injector for my shots, which is a device that gives you a neato way of loading up your syringe (while twisting your body into the right position so you could hit that day's injection spot) and then hitting the trigger button so the needle comes piercing through your skin quickly and easily. I was a pro at the auto-injector.

My body didn't tolerate Copaxone well but I used it for almost two years anyway. I always had large, red, burning, itchy welts after injecting. It didn't matter if I used heat or ice, put gel or cream on after the shot or not, massaged the area or pushed down on it; those welts were there to stay. They came and settled in for weeks so you could pretty much always tell where my last two weeks' (or more) worth of shots had been.

I also had constant low-grade fevers because my body wasn't tolerating the drug well, the welts, and 5 IPIRs. An IPIR is an Immediate Post Injection Reaction. Nasty little buggers, these things come on fast and strong, ergo the immediate part of its moniker. For me an IPIR was within seconds of taking a shot where I would have difficulty breathing, my face turned red, my body felt like it was on fire, and my chest felt like someone was stepping on it. They would last anywhere from 5-20 minutes or so.

There was no predicting an IPIR, no reason for why they would happen when they did, but it was unpleasant the first time so I was smart enough to always inject with the portable phone near me after that. This way I could dial a friend, gasp out my predicament, and listen to them talk calmly while I tried to wheeze my way back to normalcy.

All of the MS injectable drugs are obscenely expensive, well over a thousand dollars for a month's supply, which for some injectable medications may only be 4 shots (Avonex) or maybe 12 shots (Rebif) or every other day shots with Betaseron. MS is not a disease that suits anyone well, let alone the uninsured or under-insured.

One nice thing is that Copaxone comes packed with little freezer packs that you could use again and again and a styrofoam box that can hold just enough food for you and your freezer packs, in the event that you choose to go picnicking!

I also received free, yes FREE, alcohol wipes with my Copaxone. Actually more wipes than shots so that I had a nice bonus supply in the event of any other minor medical malady. I did appreciate that.

Copaxone used to have to be stored in the fridge so that every time you opened that swinging door you were yet again reminded that you had an incurable disease, one that most people can't see, one that eats away at your brain and spinal cord like Pac-Man, one that is kinda tricky to pronounce which makes those of us even without speech issues sound like we're lisping.

Copaxone was strike one for me. I came, I tried, it beat me down. I moved on. Next on deck was Rebif.

Will you take this surgery to have and to hold? Umm, not right now, thanks.

I am going to postpone the eye massacre known as surgery. I got the final okay yesterday along with the payment amounts and I actually scheduled the surgery for October 9th.

Then I came home and thought about it, talked it over with a few people and I've now decided to put the whole thing off to help save my sanity and my sick days.

I have to get the PRK Zyoptix surgery because of my prescription and my large pupils which runs at $1590 an eye. Then you need to purchase this eye plan for 1, 3, or 5 years because down the road I will need an adjustment. I will need an adjustment maybe in 3 months or 6 months or a year or a few years later. An adjustment = just more surgery.

The surgery I need requires that they brush off the epithelial layer of the cornea and then they do something with the laser. After the sloughing off of my cornea they have to put in a special contact which covers the cornea while it heals and the new layer grows back. The contact stays in the entire time, through awake and asleep, and they remove it back in the office.

No driving at all during this period, no working during this period, this time period which could take between 5 to 7 days!

I don't have that amount of sick time to play around with in October which is only the second month of school. I have MS which means I tend to go to the neurologist and other medical providers often. Plus, it looks like I will be starting Tysabri on the 22nd of September.

I have to drive to the neurologist's office tomorrow (about an hour from where I live) to pick up the paperwork and fill it out. I am not taking it home to read it over when I know I will be doing this, unless the monetary aspect is ridiculously pricey. My insurance has been fabulous at covering all my tests and blood work and MRIs so I am hoping for another miracle here.

I will fill the paperwork out, turn it in and the office manager expects to have all the answers I need in about a week. She has told me they only infuse one day a month so I have no idea how many of their patients actually use Tysabri but I imagine I'll be finding it out.

So, although there is Vicodin involved after the surgery (I could be like Dr. House!), I just cannot do it at this time. No matter how I schedule it, it's impossible to not take off at least 3-4 working days. I just can't do that now, not with Tysabri requiring at least a half day off each month, plus my regular doctor appointments, and any other random actually-sick-from-something-else-other-than-MS-days that might appear.

Better late than never, right?

Please don't let this kid be in my class!

Okay, I know that is an image that some of you may find offensive. It made me laugh as I was searching for graphics this morning so I am keeping it. It's my blog and I'm not always a perfect little lady. I need the laugh because Pac-Man is STILL not working and not much makes me laugh heartily these days.

I do teach students a few years older than this fellow who is telling someone else they are number one, but this sign isn't one that is entirely foreign to my room. It seems like every year there is at least one special bundle of pre-pubescent joy who has discovered the power of "the finger". They use it secretly to taunt others in my room when I turn my back and write on the board, which is not a chalkboard but rather a whiteboard.

I have pretty decent behind-my-back teacher vision for the big stuff but "the finger" tends to slip by me because it's silent and quick, unlike those loud, and thankfully rare, episodes of flatulence where some ten year-old lets one rip during a quiet test or while reading aloud.

It's not really about "the finger" but about doing something one knows isn't acceptable and is slightly naughty. I use it myself on occassion when people do incredibly stupid and asinine things while driving.

Sooooooooo... besides "the finger" this is other stuff rolling around in my lesion-filled head.

1.) The sick pit in my stomach knowing that I have to go to work tomorrow all day and that I need to be in school most days this week. The kids are coming, no matter what.

2.) I'm waiting for the call from the neurologist's office about setting up an appointment to sit down and do the paperwork for Tysabri. We know that my doc doesn't call when I need him so I'll give the office two days, maybe just one, and then call to see if this can be done this week.

3.) Next week is school. No going back, summer vacation is over, get your big girl panties on, get up at the crack of dawn, and hope and pray for the best. Why is this year so different from every other year? Why am I filled with dread and uncertainty instead of delight and a reasonable amount of nervousness?

How am I going to get past this??????

4.) I'm also waiting to hear from the LASIK people about an okayed surgery and then talking about pricing. More money and time going to medical stuff but I hope this surgery really helps and works.

If you believe in prayer, feel free to send one up for me. I can also use any positive thoughts you can send my way. In the typical words of all fifth-graders when they finish a writing assignment:

The End!!!

P.S.

This is just NOT the time for Pac-Man to be unavailable. It's been screwy for two days now and I'm not sure why.

I NEED my Pac-Man to help me chill out a little bit. Pac-Man makes me laugh because I enjoy it and am still totally inept at it. The last few times I played I still couldn't get to the second level.

It's good to have something you're not good at in your life. It keeps you humble. However, right now I am a little ticked off that Pac-Man isn't working correctly!

Scared of School?

This graphic doesn't look scary, does it? Of course not. It's a cutesy school with a green lawn and flowers and a nice little bell reminiscent of Little House on the Prairie, except their bell wasn't at the top of the building.

I have mentioned several times that it is almost full-on back to work time and it scares the bejeebies out of me. There's a new schedule this year, a new classroom make up for me because I am now teaching inclusion, and there will be another person in the room with me pretty much all of the time due to the inclusion factor. Then of course, there's the MS, another unwelcome visitor but one that comes along, regardless of everything else.

I'm the kind of person who likes to know what is expected of me well in advance. This year I'll be waiting until the day before school starts to really get a solid handle on things. I have no idea how the whole inclusion process and the new teacher body in the room will work for me until I've lived it for a few days.

I'm praying, hoping, beseeching the universe that somehow this will all come together and work out.

Please let me not forget what I'm saying in mid-sentence; please help me to get everyone's name right so that when I call on Lola to answer, I am really looking at Lola and not someone else. Please help me to remember the new schedule and the times that rule our lives for the year. Please help me to be patient and for my students to have patience with me.

Sigh, even though I live in the snow belt I guess there's no chance of a snow day on September 2nd.

Bragging about a Friend: Art Unites

This is a fabulous postcard which is promoting a show called Art Unites out in Los Angeles. If you take a gander down at the bottom left corner you will view two birds. That, my friends, is a photo taken by my friend J. who lives out in California.

Art Unites is for Art Directors Guild Members to showcase their art. The people in the guild can be involved in graphics like J. is, but a lot of them are set designers and art directors for film and television.

My friend J. is looking forward to seeing all the different mediums represented at the show. The show runs from Sept. 14th through Oct. 5th at the Noho Gallery on Lankershim Blvd. in North Hollywood, CA.

It's a huge honor for J. to have two pieces in the show, pieces which are also for sale, and to have her shot on the front of the postcard.

Bravo, J! You've come a long way, baby.

Comments, Messages and Feelings

I haven't been at this blogging business for very long but it's one of the few things in my life that I enjoy that is both free and contains no calories. I've been able to type out whatever I want and some of you STILL read it, no matter the topic.

I mean let's get real, who blogs about the Antiques Roadshow besides me?

I have to say that no matter how you got here: whether by annoying emails from me, linking from another blog, or my shameless self-promotion on Facebook, I thank you. I really, really do.

I like doing this so much and I STILL can't believe that people read what I have to say. I also have to say that I look forward to your comments on here and the emails and messages I get elsewhere about the blog. Keep them coming! Those comments and messages make me feel that this is truly a good thing, not just always for myself but also for others.

On here I can be sort of fearless, which is totally different from real life. I can expose myself (oops, maybe I should rewrite that) in a way that I don't normally. I can come here and kvetch or wax on (wax off) about any topic that I think is important or fun or interesting or whatever.

No one will grade me, chastise me, make me feel less than I am, or look down on me with pity. I escape from my shell and I can just be.

What a good feeling that is. Just being.

It's time for me to get ready to go back to work. I'm trying to gear up for that. It's unbelievably difficult this year.

The heat kills me and today was in the high 80s. Not to mention that I also run a daily temp of somewhere around 100.5 which also makes me feel rather icky. I walk slower, I can't lift things that I could a year ago, and I get caught up and lost in my own words when I speak at times. I need lots of sleep and have fatigue that sometimes doesn't go away even with medication. I have a difficult time focusing and concentrating on tasks.

The other day I had to work for work (surprised by that one, eh?) and we had to basically transfer a bunch of numbers from many different papers on to other papers next to names. Then someone came over and said, "Now do the same thing with this." More papers with more numbers. Then the same person came with other papers and had to explain what the newest set of numbers meant that I was to copy on to my list.

I felt like I was in a room with a cacophony of noise so unbearable that I wanted to cry.

There must have been about 35 people there doing the same thing: talking, passing papers around, finding the right names and numbers and transposing them to their master sheet. It wasn't a problem for anyone else. They could listen to the person speak and keep on working away. I had to stop and listen because I couldn't do both things at the same time. A few years ago, that would not have been a problem for me at all.

Now most tasks take much more focus and any distraction, any noise, any new task added on top of what I am doing can feel overwhelming to me. I was already behind and we had just started for the day. Scrappy little worker that I am, I was trying to keep up, speed up, write faster but it just wasn't happening.

A short while later, we received our big box of student folders that hold other important information that we read through and write down information from them on to our special sheets. Some boxes were on a chair, some were on the floor. By the time I finished the first three tasks we were supposed to do, everyone else had moved on to the folders.

They had picked up their box of folders and positioned them so they could peruse them. Some boxes were on the table now and others still nearby on chairs next to the table. My box, the box I can't lift anymore, is on another table maybe 40 feet away from the table we were working at.

I felt defeated again. I have used that word in various posts. It seems to be the most accurate word that expresses how I feel in these situations.

A stupid box made me want to cry.

I couldn't pick it up and bring it over to the table. There was nowhere to really put it anyway so I ended up working by myself in another area. I wasn't too far away, as I mentioned maybe 40 feet or so but it felt like a chasm. A deep one. A wide one. One I couldn't cross.

I sat there looking out at everyone else and felt different: weaker, slower, dumber, and most definitely not part of the group. I tried to do my new task and the good thing was that it was slightly quieter in this new location. The horrible thing is all the rest of it.

Sometimes I think people look at me and think I'm faking or exaggerating my issues. I rarely talk about my MS at work unless it's clear that I'm hooked up to an IV pole and having some problems.

I worked through two separate IV steroid treatments last school year hooked to an IV pole, one a five-day and the other a three-day affair. It wasn't fun or the ideal situation but I can't take all those days off from school. I use all or almost all of my sick and personal time up each year. I'm not talking about leaving early or coming back late from a beach vacation, either.

There are days when I am driving to work and I am so fatigued that I know I shouldn't be on the road. There are nights that I come home and immediately go to take a nap. Then I wake up and do more work at home until my bedtime. Sometimes I stay awake until nine but more often than not, I'm already asleep by then.

I am hoping that somehow in the next week or so I have left until we officially start school again, that some miracle will happen and I will feel rested and ready and eager to start a new year. I'm hoping that my Tysabri paperwork appointment will come soon followed by the Ty treatments once a month.

I am hoping to get some semblance of my life back and to find my smile which seems to have gone into hiding. If you happen to see it out there somewhere, please forward it to me. I need it, I really do.