I will survive, hey hey...

We made it through last week's tremendously hot, hot, hot Tastefully Simple party. I earned $65 worth of free product so that was a nice bonus to seeing my friends gathered in my little sweatbox apartment.

Today I started taking insulin for my diabetes. I am still taking all my other diabetes meds so now I am doing two shots a day: one of Victoza and one of insulin. My A1C was up from 6.7 to 8.3 and my glucose numbers are way too high.

I am also dealing with the stress of a work friend who is very ill and in the hospital again. He has been sick for many, many months and hospitalized for almost that whole time. He was improving but now has had quite a setback. I am sending up many prayers for him and his family.

In my free time I am working on making cards and a scrapbook page for upcoming events. I feel like I am slowly making progress with my business although I am not pushing it very hard. It is mostly about me right now and I am okay with that. I am just enjoying the crafting and pure joy of making beautiful things.

Oh, and on the MS front, I was the number one individual fundraiser for my local work and the 39th highest fundraiser in the state. Other than that, I am doing my monthly Tysabri and doing well.

The biggest hurdle I need to clear is the diabetes and obesity issue. Move more, eat better, take my meds, and test, test, test. I'll make it!

Remembering

Today is the one-month anniversary of my Dad's death. He went into the hospital on November 5th and died on the 8th.

I am not at work again. The anxiety is too much. It reaches into my stomach and pulls everything out until there is just a sick feeling. A feeling that I can't rid myself of and cannot control, one that makes me physically uncomfortable.

I feel safer in my house where no one else can get to me, no one else can see me. I can cry or just curl myself into a ball on the bed, lying motionless.

I am going back to see my trusty and wonderful therapist that I left behind in May. My need for him was over until recently. I must talk to someone about this anxiety.

He is a psychologist not a psychiatrist so he cannot adjust my meds. I feel like I could pop Xanax as if they were sweet tarts. I do not do this, however. More often than not, I forget to medicate myself. My diabetes is currently in charge of my poor pancreas, not me. I need to do better with that. Need to take care of myself all of the time, not just once in a while.

Some days pass quickly, in a blur, and others drag on forever. Sometimes hours are eternities and others mere seconds.

I still feel all the feelings that come with grieving: sadness, anger, guilt, weariness, and selfishness. It's like they have become entities that choose times to do battle with me, when I am peaceful they strike to remind me that no, not everything is okay.

Five years ago, on December 5th I was diagnosed with multiple sclerosis so Monday was almost a double whammy. Remembering Dad, remembering that you have MS and stress is not good for it. Meanwhile stress swirls in and out, like a rogue winter wind. Thankfully, the MS has mostly remained under good control. There have been a few bad days where I was just too exhausted and it all caught up with me.

Thank goodness for remission.

Thank goodness for my many friends who continue to support me during this time of adjustment. How do you ever get over the loss? Yet you do, your life moves on, and you must become in charge again.

Thank goodness for the fact that even though there were years of bad blood and resentment, that those days were pushed into the past safely and securely while a new relationship had been building in the present. Therapy and meds have literally saved my life, saved myself from being a victim of all the bad, and turned it all around until I faced everything head on and said, "Okay, this is my best me and I'm not going to take anything less than the best."

Thank goodness for therapy and meds, truly. Without them I would not be here today, sitting in this room, typing out my feelings, tentatively feeling an ounce better than I was when I started this.

Thank goodness for my Dad who used to throw me in the pool over and over forcing me to swim to survive. I now love to swim and that is one of his many gifts to me. I am a lucky, lucky girl.

Taking care of myself

I did not go to work today.

When I awoke I was so tired and so dizzy and wobbly that I knew today was just going to be a day for me, a day to take care of myself. My MS and diabetes have been rearing their heads while I have been going through these stressful last few weeks. I have been so very tired on every level.

Tomorrow is the last day of work for the week. I should go in and do my thing but I am going to wait and see how I feel tomorrow. It was all I could do to make the drive to work this morning without drifting off the road. I had slept all night but I am literally on the edge of exhaustion.

Exhaustion with multiple sclerosis is a crazy thing. It's hard to explain to people without MS. It's just such an all-encompassing tiredness, one that every cell feels. Sometimes it is just too much effort to even move. That's part of the reason why when I came home from work (to drop off my plans) I went back to sleep and slept until after three o'clock in the afternoon.

The thing is I am still tired now but I am going to order myself some dinner/lunch. Then maybe I'll take another nap. It's time to take good care of me so I can continue to take care of my family, friends, and students.

Infused

I sit perched on the edge of my recliner writing in my journal with my free-from-Staples red pen. I'm watching E! while chewing on a Dunkin' Donuts cookie and occasionally sipping my small caramel frappe. Yep, I'm plugged into my IV; it's hooked into my left hand, taped above the Silly Bandz on my wrist.

It's infusion day for my Tysabri, the liquid gold medicine for my multiple sclerosis. I'm at the infusion center where I'll be for about two hours while my medicine and then some saline will drip into my veins. This medicine seems to be keeping me in remission which is a wonderful thing. It's also wonderful that I have insurance, a good neurologist that was willing to prescribe this, and an infusion center about 50 minutes from my house.

I'm a lucky girl.

I am lucky. I have a good job and I live in a beautiful area, one small block from gorgeous Lake Ontario. I have great insurance with low prescription co-pays. I work in tandem with great medical providers. I am lowering my blood sugars. I have a handful of close friends that I can count on. I have a blog that I adore and people who read it.

What's not to like?

Oh cr@p!

This morning I was deeply humbled by an incident that made me grateful for my current good health. It was early and I was checking my blood sugar. I had just hit the button on the lancet when I realized I needed to go. Yeah, that "kind" of go. And I went as I was dripping the blood on my glucose strip.

You should have seen me. There I was bloody and trying to do the responsible thing for my diabetes as my multiple sclerosis "reared" (oh my, what a pun) its ugly head. In case you're wondering, I didn't quite make it in time which is why this post is aptly titled.

I rarely write about my MS because I am in remission but I do have bladder and bowel issues. I just tend not to mention them because it's embarrassing. Who wants to admit they cr@pped their pants? This happens more than I care to admit, about once a month or so but the feeling that I have to go sometimes comes upon me so quickly that I have to whip my apartment door open after shopping or hang up on friends to get to the bathroom. Sometimes I barely make it.

It's not so bad if you pee yourself but doing number two on you is not something you brag about to your friends. Some of my friends know that I have these issues but most people don't. I take Ditropan to help with the frequent urination. When I go out or am at work I limit my food and liquid intake. Thankfully this year I am right across the hall from a bathroom.

The diabetes meds all cause me some sort of diarrhea. That's the stuff that can hit me like that, making me squirm while someone is talking to me at work. My stomach starts to churn and gurgle and I know I have to leave in the next few seconds. People at work don't know I'm about ready to cr@p my pants so they just keep talking while I look for a way out of the conversation.

So if you see me walking quickly down the hallway to the restroom, don't stop me!

Things could be much worse so the only thing left to do is clean yourself up, buy more big girl panties and chuckle at the messy stuff that is coming your way. :)

Much ado about nothing

Yes, I have been away for a while. Yes, I have neglected ye olde blog. Yes, I have been keeping my head above water. The good news is that I just have not had anything to kvetch about so I have been keeping my distance from the blog.

Just today I received two messages asking me if all was right in my universe. The answer is a resounding yes. Work is going *much* better than last year at this time. Last year I was floundering and had been out sick a lot by this time. This year finds me doing much better health-wise. Little fatigue, less pain, and my brain is working at peak strength when I need it. I have a lovely little classroom and I am in love with my new SMART board. It's been down for two days and I was bereft without it.

But truly, I am doing so well it is rather astonishing. I do go to bed early because I love me some sleep. I am a gal who can hit the hay at 8:30 and then awake at 5:30. I do still need my Provigil to get me going along with the rest of my morning meds. Then I am off around 6:30 driving my short route to work.

I loved my birthday time. It's great to be 39 and on the right side of the dirt as I have mentioned before. I love a birthday and feel as if it is my own personal holiday. I must have had at least 40 or so happy birthday messages on Facebook on my special day. What a great way to feel like a star!

There is some news in my little part of the world that is not all sunshine and roses. I just found out that my younger sister will be deploying again, in January to Afghanistan. She'll turn 26 in a few weeks but she is looking forward to going. She is an engineer by training and a captain.

I'll worry about her of course but I am so proud of her. She loves what she does and she is good at it. Thank goodness that we have an all-volunteer army so that there is no need for a draft.

I do hope we get ourselves out of the quagmires that are Afghanistan and Iraq sooner rather than later but until we do, thank goodness for all of our soldiers, sailors, airmen and women, and Marines.

Anything new in your world?

Cooling vest

Above is a picture of the cooling vest I ordered today. I am tired of the heat and humidity of the past few days so I relented and purchased one from the MS Shoppe. It was marked down to $135.99 I think, if my memory serves me correct. I am hoping this will be a good buy for me.

I got the biggest size to fit my portly frame. I figure I can wear it on hot days and maybe I'll even debut it at work when I go in and try to set up my new room in September. If it's really helpful then maybe I'd even break it out during the hot days at the beginning of the school year because we don't have any air conditioning.

We'll see how it fits and feels first, before I wear it at all. Then if it fits and feels okay I can wear it around my little apartment. Then maybe I can move it out into public and see how I adjust to life with a cooling vest. Perhaps I'll sew a letter or a snazzy symbol on the vest so I'll be like a super hero for those with MS.

Anyone have any ideas about what I could sew on there, feel free to drop them off as a comment.

Does anyone else have a vest that they actually use? If so, how does it work for you? I'd love to hear any responses you might have.

Thoughts....

I wonder if other MSers wonder what the future will bring for them. It's been on my mind lately and more so now that I caught this story from Facebook that showed MS in mice being cured at McGill University. Here's the link to copy and paste if you'd like to read more:

http://www.physorg.com/news169211700.html

I also saw on Facebook today a comment by another MS blogger about seeing an older MSer using a walker and being helped to the bathroom by her daughter. She hoped for a cure so she wouldn't be in the same situation. I responded that I would like a cure too because I don't have any kids or a spouse to help me if I was in the same situation.

I sometimes wonder about life with MS five, ten, twenty years from now. I know MS brings with it so many surprises. That's perhaps the most difficult part of the disease when you're in remission, the unknowing of what will happen next. Will I wake up unable to move part of my body? Will I wake up with vision issues, unable to see from one eye? Will I wake up with such weakness or numbness that it affects how I move?

They say people don't get MS until they get MS. That may be partly true in some sense. MS is so different for each person who has it that even if we all blogged about it no one would be able to keep up. Heck, I can't even keep up with all the blogs I have listed on my page.

But I worry. Will I sleep through the night without leg cramps? Will I wake up tomorrow with my numbness back? Will I make it through the school year? Will I remember the words I want when I am speaking?

What happens to me when a big relapse comes? I have so many stairs to get in and outside which makes even things like getting the mail or getting groceries a marathon. I have had to use a cane in the past when I have had severe leg weakness. I have had times where I couldn't drive because of leg weakness.

Who will be there to help me? I have no children I can put to work on small chores and I have no spouse. I live alone. I sometimes fear that I will need help but I won't have anyone to help me with that.

Sometimes living with MS is a scary thing. I can't let that run my life or ruin it but it is something I think about.

Good news

Good news: The thigh numbness is gone. I am chalking it up to an MS fluke.

In other MS news, I am going to call cute initially guy and ask for a new med to be added in to the mix. I had another almost near accident today and thinking about another near accident last week at work makes me reevaluate things. He suggested adding in Ditropan the other day to help with bladder urgency.

I think if I start it now then I'll get any potential side effects out of the way before school starts. By the way, did I mention that our school building is closed for the entire month of August? That means I can only get my new room in September to get the room set up. Which also means that I just cannot worry about the whole school thing right now so I am not.

Other than that there's nothing else new. My legs and back are still giving me some impish problems but not anything bad. I'm just watching and waiting. Most of my waiting is spent in bed asleep or reading. I do love me a good nap and a good book.

Later taters! (Also stolen from Mike!)

A bit on my thigh

No, I won't be showing it to you but my right thigh is numb. I woke up this morning with this new symptom. Could be the start of a new flare and that just wouldn't be fair, especially after I saw initialy guy yesterday.

I now return you to your regularly scheduled internet. (Borrowed that from you, Mike!)

Neuro appointment

A quickie:

Drove out to see the neuro today, err rather his N.P. or his P.A or something else with initials. I get the funny guy who speaks good English; that was my choice when I first went there. The other doctor is good but when he speaks my hearing is on a pause-delay system and by the time I understood what he's said, he's on to talking about something new.

So I go to see funny guy and I don't really have much to report. I talked about the urgency issues for #1 and #2. He suggested Ditropan (sp?) for issues with number one but I told him I'd rather hold off on more meds for now.

He suggested I actually take the fish oil that I store in the freezer and that will help me with my leg cramp issues. The more I do physically, the more I cramp.

I told him I noticed that I walk slower but that's just the nature of this beast. I can walk, heck I could even do something akin to a run if absolutely needed (it just wouldn't be pretty or feel good).

We shot the chit for a while as we usually do and then he brought up the oral meds coming out within the next year or two. He told me flat out that they would not be suggesting or allowing any of their patients to start on the oral meds right away. He said that he is hearing their efficacy rate to be around 45%, which he says is lower than anything out on the market already. They are coming with some hefty possible side effects like heart problems and lymphoma. Then again Tysabri, my current med, comes with the possible side effect of PML and death.

So I won't be switching from Tysabri any time soon. I will watch what happens with the oral meds for the first few years and then see what happens. Maybe down the road I won't need to take time off each month for an infusion. Maybe I'll just pop a(nother) pill and that will be all I need to fight off MS, plus all the symptom meds.

Either way, in the meantime I'll still be seeing the kinda cute initialy guy. I have another appointment in six months and we're not doing any new MRIs unless something comes up between now and then.

Sounds like I am doing okay for being on summer vacation, folks. Now if we can just make it through setting up my new room at school in early September and make it through the whole school year we'll be doing swell. It would be the bees' knees, baby.

Today

To what we call today, that is what I've decided to write about. What did I do today? First off, I woke up around three a.m. for the bathroom and was up for a while. Don't ask me why but I decided to eat breakfast then. Yes, at three a.m. And what did I eat? A bowl of my freshly made veggie beef soup.

Then back to sleep after being up, eating, and reading for a bit. I slept until almost 8:30 a.m. I was up to feed the cat, go to the bathroom, and then back to bed to read. I fell asleep again and woke up around 11 which was just in time for my alarm. Well, I had twenty minutes to spare with the alarm so I was doing well.

Shower and coiffing and then some online time before I left to go to my parents' house for lunch. I managed to cut myself in the shower while shaving my legs in the same place I always cut myself. This led to major bloodletting and a nasty looking cut on the back of my right ankle.

I drove to the grocery store to pick up some already barbecued chicken and fruit for the luncheon with my parents. I arrived at their house on time. I could notice that my left arm was weaker than my right as I was helping out by shucking the corn. I could also feel a visible weakness in my back and a slower walking rhythm. I was still tired after we ate and I realized that I had forgotten to take my morning meds cocktail. I also don't take Provigil during the summer so I sleep a lot. I wanted to lie down over there but I didn't have my C-PAP so there wasn't an afternoon nap.

I had a nice visit and I was hoping for a phone call from my brother in Germany as he usually calls my parents then. No dice today though.

I drove back home and read and tried to sleep. It was too late for a nap according to my body clock so I am now looking forward to an early bedtime. I go to see the neurologist on Tuesday and I know he will not be happy with my weight and lack of concerted exercise. I imagine we'll talk about finishing the school year out for the last two months and my plan for the new year starting in September (the day after Labor Day is when we officially start working). I'll mention my tiredness and my walking which is soooooooo slow compared to everyone else, and my bowel and bladder urgency. When I have to go, I HAVE to go right then. Sometimes it just comes upon me likethisfast and I have to go within seconds or I will have an accident.

Yes, I have had accidents. That's embarrassing to put out there but it's true. There have also been times when I have been at work or out and have almost had accidents, too. My shrink has suggested using "products" to deal with this but for now I can usually get to a bathroom in time when the feeling comes on me. I just have to monitor how much I eat or drink at certain times. You'd think I'd lose weight with this kind of program. Plus, being 38 and dragging my cart around at Wal-Mart with a giant bag of "products" in it is not cool when you run into your 10 and 11 year old students.

So that's my life today, totally in the present. Could be better, could be a lot worse.

And now...

Yesterday was all about the beginning of my life with multiple sclerosis. Today's writing will be about my life with MS now. I am doing much better with it. I've been diagnosed since December 2005, seriously ill with it since December 2004. Looking back I can see signs of it before even then. I was always seriously fatigued, even going back as far as high school when I should have been full of vim and vigor.

There's lots of little things that connected the dots to the diagnosis of 2005. Severe pain and weakness in my arms thought to be carpal tunnel syndrome, falling down when I tried to maneuver a curb at the mall with my friend BJM. Cramps and twitches during and after my running.

Then came three days in the hospital and a final diagnosis.

Since then I do not spend all my extra time on MSworld.org searching through posts. As a matter of fact, I stopped by the other day for the first time in about 4 months! Now I do spend time reading some of my favorite blogs written by fellow MSers. And there are lots of blogs out there, trust me.

My family recognizes the MS now. As a matter of fact, my mom wants me to move into an old folk's home so I can live without stairs. There are lots of stairs where I live now. (I'm not moving in yet!)

I now take a medicine called Tysabri which is a once every four weeks IV regimen. I call it my tune up. I have no site reactions or post injection reactions like I did with the shots that I started with a few years ago.

I'd like to write more on this but I am feeling tired so I'll end this for now. More to come, I promise.

In the beginning...

Nah, I am not going to quote the Bible or anything like that. I just want to talk about my life with MS in the beginning. It seems so different from now.

In the beginning my diagnosis was a long, lonely haul. It took me a good year to get a real diagnosis and it was no surprise when it came. I had long since diagnosed myself after my MRI had come back with lesions on the brain and I had been having some symptoms that fit that criteria. It just took months for another neurologist to believe me and correlate my findings.

My family was not very supportive in the beginning, meaning my parental units. They could have been worse but they could also have been a lot more kind and understanding. I mean, my mom didn't even believe me when I told her the doctor officially diagnosed me with MS. She thought I was making it up. She believed me to be a hypochondriac of sorts throughout my life. As an aside, my mom is a nurse who also turned her face away when I was a very sick and thin bulimic.

In the beginning, I turned to online sources such as MSworld.org. There I found people in my same situation, people who could relate to me and answer my questions. That site was my home away from home for months, for probably a solid year or two of my diagnosis. I spent so much time there that it did feel like a safe place for me to be and to talk about MS. I encourage anyone who wants more information about MS or multiple sclerosis meds to stop by their message boards.

That was my life in the beginning of this mess. I'll write more later about what it's like now.

MS and me

I was diagnosed with multiple sclerosis in early December of 2005. It took two neurologists to finally diagnose me correctly long after I had thought that MS was my diagnosis. The first neurologist couldn't find anything wrong with me even though I had lesions on my brain. He told me that there was no way I had multiple sclerosis. Maybe I should write and ask him for my money back.

The pictures above are not mine, but they are MRIs (magnetic resonance images) of a person who does have multiple sclerosis. I just searched through google images for an image that would be appropriate to go along with today's post. You can see the lesions or sclerosis (scars) on the brain. They show up as bright white spots. When I look at my own MRIs it seems like everything is lit up or nothing is so I can never tell my own lesions from what should be there. My new neuro's PA has to point them out to me and he does.

I have one lesion in my spine around C3-4 and a handful or more in my brain. The ones in my brain have lessened over time which is possible. Lesions can heal themselves (or remyelinate) but it doesn't mean that they will. I have had a decrease in my number of brain lesions so that means some of mine have remyelinated. My spinal lesion has been there since the 2005 diagnosis so that one appears to have staying power.

When I was originally diagnosed, after three days in the hospital and one botched LP (lumbar puncture aka spinal tap) and one done under fluoroscopy (X-ray guided) and a bazillion other tests, I went on Copaxone. Copaxone is a daily MS med that comes in injectable form. Yep, that means that you give yourself a shot every day and remind yourself every day that there is something going on in your body that can pretty much do whatever it wants to do. Two of my greatest fears are waking up blind in one eye or paralyzed on one or both sides. Sometimes MS manifests itself that quickly, one moment fine and the next with a big problem.

For some people there is a denial stage when they are first diagnosed. For me, it was more of a "Finally!" moment, one I had been searching for for one year. I presented with lots of various MS symptoms starting in December of 2004. Some symptoms started long before that, primarily fatigue which has been a problem of mine since high school. My first major symptoms were weakness, numbness, difficulty walking, nystagmus (eyes jumping from left to right), dizziness, and a weird variation of L'hermitte's sign which was like an electrical current passing through my entire body which would render me unable to move for about 15-30 minutes. All that and there was nothing wrong with me!

Those first two years of being diagnosed, and most definitely the first year, found me often online at a community called MSWorld.org. It was a place where I could go and ask questions of other MSers and feel like I belonged. No one in my family had had MS and my mom didn't even believe I had MS at first, even after the neurologist diagnosed me. (Not to mention that no one in my family came to see me in the hospital for three days and they lived 50 minutes away. I drove myself to and from the hospital.) That site was a godsend for me. I also found MS blogs that were another source of inspiration.

I no longer have to go to those sites every day like I did in the beginning. I am a person with MS, an MSer, but I am also a writer, a teacher, and a woman who is closing in on 40. MS isn't my whole life anymore but it does affect my life on a daily basis. I take a number of pills in the morning and at night to control my symptoms. Lately the pills haven't worked as well because I am often not able to sleep throughout the entire night and my legs have become more restless. I also am out of work on a medical leave that ends on 1 May. I worry about my cognitive skills that affect my writing on here. (You get the cleaned up and edited version.)

I also no longer take Copaxone daily. I switched to another medication called Rebif, a three-times-a-week injectable medication known as an interferon. I am now on a third injectable med called Tysabri. It comes in an IV infusion form once every four weeks. As I type I can look down at my right hand and see a slight bruise from a blown vein. On my left hand I have a much larger bruise on top of my hand where I had a successful infusion on Tuesday.

I have MS and it has me. I am a blogger with MS but I write about lots of things. If you have any questions about multiple sclerosis please ask me. I'll do my best to answer them. Thanks for reading.

PS: I need to send a shout out to my sister, CNS, who is going to make a monthly donation to the National MS Society. You rock, sissy. Ditto.

Oh the little joys (annoyances) of MS

Once again my sleep is interrupted and I am awake at an ungodly hour. Yesterday I was awake from 2:30 - 4:45. Today I was awakened at three a.m. and I found I had peed the bed a little. Yippee! Isn't that what every 38-year old woman does?

I know my multiple sclerosis is fairly benign compared to other people's MS. However, it's been ramping up silently and slowly lately and it's starting to really annoy me. For example, the sleep thing is getting ridiculous. I take enough meds at night to knock out a horse. Two of those meds are Requip and Baclofen which should take the edge off my muscle twitches but not so much lately.

Most nights, or should I say mornings, I'm aroused (NOT in that way) because my legs are a-popping. My calf and lower leg muscles are bouncing around and bouncing against each other. I can only ignore so much and then I get out of bed. Once I am upright the popping or muscle fasciculations (fancy word for twitches) usually stop. I am so desperate to sleep through the night that I usually put a hot corn bag (like a heating pad) under both legs each night before I go to sleep. That is what I used to do this past summer and it worked much better than it is now.

So here I am b!tching about minor things when I know it can be much worse. I need to call the neuro's office again today to check on things. The last time I was there we talked about my lack of sleep, which, if you know me has never been a real problem before. I need to talk about my increase in leg fasciculations because it's not even close to summer yet when things really ramp up to a high level.

Anyone have any ideas or suggestions for the sleep and/or muscle twitches? I don't think it's a case of missing any potassium or something like that. I know the neuro wanted to try melatonin for sleep but I am wary of that because a friend sent me a link saying that it may not be the best for people with MS and that it can affect depression which I also deal with on a daily basis. That means I need to ask the neuro about that specifically.

Sigh, I know it could be worse but it's not usually like this in April when it's not even hot yet. I'm done b!thcing for now. Wish me good night, please!

The end of Christmas

I'm showing my MS symptoms here while I am trying to undecorate my Christmas tree. Standing for a few minutes and bending and holding those little tiny colored ornaments is killing me. Again, it's like a mini-marathon of activity. Do a little and then sit down for a while.


I have a friend coming over on Friday to help me take down and store the empty tree. She thinks it will fit back into its original box and she, being the same person who showed me that the oven door can come off, may just be correct. If it was just me I'd probably end up with it in the living room all year long so thank goodness for my friend, the Goddess of Cleaning, BJM.


I'm also trying to get my sick bank leave extended. That seems to be much easier to get an extension compared to the original request to use sick bank time. The crazy thing about it is that it's deja vu all over again. My dad had a nuclear stress test on Tuesday and the results weren't good. He has an artery completely blocked and needs surgery again. It is supposed to be scheduled for Monday of next week. This will be his fourth surgery in about 6 weeks, all on his heart.


In other news, I received a nice blog comment from Pitney Bowes who must have people scouring google to see where their name turns up. I mentioned a neat program that they were promoting called Holiday Mail for Heroes in early December. You could send cards to a certain address and the cards would be distributed to military personnel and vets all over the world. I sent in some cards left over from last Christmas and a few new ones from this year. I've already bought the clearance cards so I can participate in the program next year.

Here's the blog comment from Pitney Bowes:
***********
Pitney Bowes has left a new comment on your post "Holiday Mail for Heroes, an easy way to help other...":

On behalf of everyone at Pitney Bowes and the American Red Cross, thank you for all of your support in helping to spread the word about the “Holiday Mail for Heroes” program.

We would like you to know that we’ve not only reached the goal of delivering one million cards to US service members, veterans and military families, but we surpassed it! And it’s all because people like you and your blog readers who got involved. View the following video for more details and a personal message of thanks from all of us: http://blip.tv/file/1643672/.

We could not have done it without you.

The roll of the MS dice

Lots of people ask me how I am doing on the Tysabri for my multiple sclerosis, which is a hard disease to type by the way. Tysabri is one of the newer meds for MS and is given once monthly via an I.V. method. The ease is great compared to other meds for MS that I have been on. Once a month I go to my infusion palace and sit in a comfy chair for two hours and watch the good cable TV. (Alas, for budgetary reasons I have the most basic of cable services at home which consists of about 16 channels. These include the major networks, a CNN, the E channel, the Style network, and a few different PBS channels for about eight dollars a month.)

The only down-side to Tysabri, for me, is that I have increased back pain and fatigue for the first few days after a treatment. Usually the next day or two after a treatment, I am laid out like the flu has hit me. There's also the drive there and back in the winter which is about 45 minutes or so. The price can be an obstacle for many people but my insurance has been covering the entire costs of both the medication and the infusion facility costs. I'm a little worried come January if the gravy train will still be rolling or if I will be paying some of it. I'm hesitant to venture that I'll be paying out of pocket for some of it but not the entire almost three thousand dollar EOB I get.


I have, in the past, taken an injectable medication once a day each day for about two years (Copaxone). I also took Rebif which is a thrice-weekly injectable after it was deemed that Copaxone was no longer my best "shot", pun meant there.


Tysabri doesn't cure MS or make your symptoms stop happening. People always ask how my symptoms are and some of them are the same, some of them have gone away. That's just the roll of the MS dice. Anecdotally, there are people who are finding some symptom relief as they continue on Tysabri. I knew some people who are up in the dose range of 25-28 infusions and they are doing well with no progression.


That's basically what Tysabri is supposed to do, stop progression and lessen flares. Its efficacy rates are about double what any of the injectable meds are putting out there. Then again, there are some people who find they are allergic to Tysabri and that takes it off their list. There is also a deadly disease called PML that you can get from taking Tysabri. Recently, an American patient contracted PML and died.


For some people Tysabri isn't what they want or need. There are lots of other options to try before Tysabri and some people don't use any meds at all. I prefer, personally, to use everything in my arsenal to keep me upright and moving around to the best of my ability. Some days that ability is better than others.


For example, I just took two bags of recyclables to the containers outside of my building. Neither bag was heavy but I had to climb up the stairs in my building to the main door, then I went out the door and down the stairs to the ground, and walked past a few buildings to the garbage area. I was breathing hard on the walk over and on the way back my own back was all out of sorts. By the time I got inside I was sweating and had to put shorts on and sit in front of the fan to cool myself down.


That's a problem I have all the time. Walking and trying to carry things really tuckers me out. It doesn't matter how light something is, it becomes like a marathon. That's why I try and walk with the Walk Away The Pounds DVD a few times a week. I am trying to also get myself to go from playing the Wii sports to using my Wii fit as soon as my Christmas tree leaves, which should be sometime soon thanks to BJM. I'm trying to build up my strength slowly while taking care of my legs and my back/hips. I'm a big girl so I have to move and lose the weight however I can, no matter how long it takes.


My goal is to be fit and as strong as I can be by the time I am 40, despite MS. I turned 38 in September and I have a lot of weight to lose. I'm tired of being the fun one with the pretty face. I want to be able to fit into my pants and then have them be too big so I can buy smaller pants and then repeat the cycle. I have to battle the daily, constant fatigue and weakness in my legs and back/hips but I can't let that stop me.


Just as I have symptoms that change, I need to do what I can to make my body the healthiest it can be. That takes time for all of us whether we have MS or not. As an aside, my infusion palace has shown some anecdotal evidence of their patients starting to not have as much as fatigue around treatment number eight. I just finished Tysabri treatment number four and I am hoping that I will see that change. I know it's not what Tysabri is supposed to do but I am hoping for my own mini medical miracle because fatigue is my biggest problem symptom.


Wishing you health and happiness in this new year,
Weeble Girl

Saturday update: work and health

Work life:

I made it through this three-day work week, after taking two days off, and next week will also be only three days because of Columbus (hero or despised invader?) and a professional development day.

Wait until you hear what our professional day centers around. Wait for it... some crap called GIS which I think refers to Geospatial Information Systems. Or it could be Geographical Information Systems and my MS is just blocking the real definition.

I have to have a partner for the activities during the day. I will get to play with a SMART board, which I don't have in my room. I just this last week had my borrowed TV and VCR hooked up correctly to show videos to my students. I mean actual academic videos and no just crap you throw in when you're too damn bored/crazy/lazy to actually teach.

I also believe we will be outside working on geocaching which sounds like great fun but will it really make me a better teacher? What I really need is time to work in my room uninterrupted by anyone else. I need time to put things in my computer, time to sort out my materials for my upcoming units, time to just sit and think and breathe without a time deadline hanging over my head.

There's something else we're doing that day with technology, and all it sounds great, but a whole day devoted to it? We have one SMART board at my grade level and I've heard from a reliable source (its owner) that it doesn't always work well. Some people have wall-mounted flat screen TVs which look great but actually have a smaller screen so kids need to be right on top of it to see what's going on. Some of the new TVs have already burned up because we purchased them cheaply and that company is no longer in business. Technology in our building for the average teacher, especially in my world of fifth grade, is ridiculously behind the times compared to some other local schools.

Health-wise:

I'm complying and taking my meds, including my new directive to take 2000 IU of vitamin D3 daily and my multi-vitamin with iron. I have a bruise now from my hand IV insertion. I don't cry as much.

My hands, however, have been real problems for me for the last three days. They ache and hurt so by the end of the day that I can't hold my book up to read. I could barely hold a pen during the last half of the day yesterday and write. I had to write some notes home and it was so painful and my handwriting looked like scribbling. I felt awful that I couldn't do such an easy thing.

Food is still a problem. Sometimes I almost eat two meals a day and then I have to purge myself from dinner meal stuff every other evening. It's like I have to punish myself for allowing myself to eat and trying to feel.

I'm angry but don't show it so that's how anger comes out for me, literally. This is my old bad behavior rising to the surface. I'm angry that I still feel so overwhelmed at work even though I'm working harder than ever to get it all under control. I know my observation last week went well although I have not received my invite to go down and discuss it with my boss. I know I am working harder on the paperwork and getting things graded faster. I know I have made a kazillion sets of copies for the weeks and reading selections ahead. We've started preparing for the state test in Social Studies that is coming up in mid-November.

It all seems like we're on track but the special education teacher and I am amazed at the sheer lack of effort by many students. We keep track of names on giant chart paper along with missing work. It is usually filled with at least 7 names for each assignment. That is mind-boggling for me. I have 18 math students in the lower group with two assistants and 21 students in my other regular class sessions.

How is that so many people just don't do homework? I try to call home and most of the numbers don't work. I send home notes and they don't always come back. I stayed after school twice this week to force people to catch up on work and I only worked three days. I stayed on a Friday and I never stay after on Fridays. I still do not go to lunch and sometimes I don't even eat lunch because I am working and then we have an occasional meeting.

I'm tired but having trouble falling asleep most nights. I'm forcing myself to take my evening meds earlier and hoping that will be the trick in getting me to sleep. Here I am on a Saturday morning awake at 5:30 for no reason and I am tired.

My mind still gets muddled at work. Names and words and papers and answers get all mixed up. I try to cover myself but children are fabulous at pointing out every wrong thing I do, no matter how many wrong things they do.

My typing on here is atrocious. I sometimes miss words altogether, I spell things wrong and I have always been a super speller, and I type the beginning of one word and end it with the letters of the second word and I type the second word and finish it with the letters of the first word. Almost every other word I type now is wrong in one way or another until I go back and fix it.

Is at all better? Yes, slightly.

There are many times when I am home and I think about the whole Heath Ledger thing. Did he really overdose on purpose or did he just mix things and accidentally kill himself while trying to feel better?

I'm not saying I am going to do that. That is not my plan. I can understand completely how a person could be in such a place that they mix and match meds trying to feel better. I try to act like I am better but I still didn't answer the phone last night when my best friend from Maine called. I prefer not to talk to anyone because then you have to pretend.

It is easier now to pretend that all is wonderful in my work world, thanks to the med increases. I know I have to keep working now, no matter what. Maybe in the future I can afford a leave but I can't afford one now. Maybe Tysabri will work in the next few months. Maybe I will get that miracle I'm hoping for in my life.

All I know is that my hands are tired and I am tired so I need to end this. I know there are so many people out there much worse off than I am. I try to remind myself of this so I will buck up and stop b!tching. When that happens, you all will be among the first to know!

It's half over

The weekend is now almost half over. I feel the dread creeping in as the new week approaches. We're three weeks in to a new school year and it's getting harder instead of easier. Teaching wasn't always like this. There were years when I loved it and the beginning years were definitely tough but this is different.

Completely different. No matter how much I work at school I'm not even close to being done with everything. I bring it home and try to do more but that barely gets done. Then the cycle starts again.

It's beyond frustrating. I feel cranky and miserable and there are times when I just sit and cry and all this while being on an antidepressant and an anti-anxiety medication. I just had my AD dosage doubled before school started.

There is also something wrong with my right foot. I believe it to be plantar fasciitis which creates pain in your heel when you stand on it. It's been three weeks now and it isn't any better. I stretch it a lot but it doesn't seem to be helping any.

The pain in my foot has now created pain in my right hip. I walk differently because of the pain in my foot and every time I stand up and move, I feel it. My right hip bothers me all the time now after I get up from sitting and start to walk.

Getting out of bed in the morning is excruciating, both physically and mentally. I'm even getting a new "alarm" clock to try to help remedy this issue. I ordered the Moonbeam clock from L.L. Bean to try to make waking up in the morning a little less harsh. Instead of the shrieking noise it's supposed to wake you up gently as light slowly illuminates the room. There's also some sort of bell that is the backup to the light. Obviously, I will be testing this out on the weekend once I get it.

I hate the screeching pitch of the current stupid clock which is across the room. Then I have to try and catapult myself out of bed to turn it off. It's always a jarring annoyance to wake up and hobble over to the clock. I'm immediately reminded that it's another day of work/frustration and that I'm still in pain.

It looks like I may need to call my primary care doctor to have the hip and foot pain checked out. His office is about 45 minutes away from where I work and live so that means more time after work that I will not be working at home because I need to drive there, see the doc, and drive home. That puts me even further behind.

Do other people feel this way? My multiple sclerosis is not something you can really see. Yeah, I walk slower than anyone else in the building but my brain is overwhelmed constantly. I hate the feeling that resides in the pit of my rather large stomach because of this constant fear of Sunday and then Monday and the repeating cycle.

I need Tysabri to work some magic for me. I hope that it will help me in so many ways because if it doesn't I don't know how I will ever get to June in one sane, solid piece. Losing myself completely just isn't something I'm willing to do for the sake of other people's children.

I will do my best and I'm not giving up but I am also not staying after school every night with your child. I will stay one night a week and the special education teacher will stay another night. That's all I can give for now. I'm already there early and trying my best to remember what I started to write on the board just ten seconds ago.

I get lost in the sentences when I'm writing on the board. I get lost with my words and my thoughts when speaking. I got up to go close the door to my room on Friday and I closed the kids' closet door instead. Then I realize what I did (or didn't do) a minute later and got up to close the correct door.

I know we all forget things as we move around, from one room to another. I just do it hundreds of times a day. The paperwork that comes with teaching is astounding. I spend so much time touching, moving, passing out, collecting, and looking for papers. Kids lose their papers or turn them in late or I move the worksheets and I just want to scream.

I can't even cook anything in my apartment without using a timer that I have to carry with me because even though I may be fifty feet away from the kitchen I will forget what I am doing. I heat things up in the microwave and leave them there for an hour.

This week I noticed that I am forgetting phone numbers of people, people like my best friend who I talked to daily all summer. Now I start punching in numbers and then stop and stare at the phone. Then I hang up. Try again, but no more numbers come. Hang up. Repeat. Then I usually just put the phone back in its cradle and leave it.

This makes me mad and frustrated and stupid. Does anyone else with MS feel the same way?