Friday, October 31, 2008
Yessiree, vomit and the hacking sound it makes wins out almost every time.
So it's about 5:40 a.m. and the upchucking sounds start. I gently nudge the cat off the edge of my bed by pushing him with my foot. (I didn't abuse him by kicking him but I preferred no vomit on me or my bed things.)
The upchucking sounds continue and produced two tiny gifts/puddles of grayish vomitus. Small little Halloweenie bundles but enough to get me up to clean it up. Then it was time to feed wonder feline because he knewIwasawake and must have food rightthen.
Last night I was productive and made lasagna again and garlic monkey bread that was frozen and needed heating. Yummo!
I also looked up dates from last school year's absences to correlate doctor appointments and IV Solumedrol treatments and those absences for the sick bank leave request. I typed it all up and now have exactly 30 days off due to depression and MS, which means that I should be able to go without any gaps in my paycheck. That's great and something my boss mentioned to me to do.
I awake yesterday feeling refreshed and felt pretty d@rned good. Then I went out to run errands and the cognitive thin spots were showing through like a shabby couch after my cat has exercised his nails. I went to the post office and the lady there insisted my debit card wasn't one, even though I know it is and I've used it there before. I lost the stamps she just gave me during the debit card debacle. I walked outside and couldn't find my car which was right in front of me and the only car of its make and model in the whole d@mn lot.
I did some more errands after that with the same kind of lackluster precision and then decided that was enough for the day and went home for a nap. It's all about the sleep, isn't it?
Thursday, October 30, 2008
The depressed dwarfette slept through until about 7:40! The cat started meowing around 5 something but with an occasional pat he would settle down and I could sleep some more until he meowed again and I patted him, and repeat until I finally got up to feed him.
I feel so much better and clearer. Wow, this is great stuff. I go to bed somewhere between 8:30 and 9:30 so sleeping a lot is clearly something my body craves (along with chocolate and most other yummy foods).
By the way, my Facebook is now working just fine. It seemed to fix itself by the end of the day that I was complaining about it. I swear it was acting up for me. If there is anyone out there who wants to be friended on Facebook, send me an email through my profile page and I'll add you to my list.
I just got a call from my therapist's office canceling my appointment for today. That's a good thing because I didn't even know I had an appointment for today. In my book, it's for next Friday but she said he'd see me in two more weeks. Now the schedule is all off but at least I didn't miss an appointment today! I would have felt like an idiot, moreso than normal.
That's all I've got for now. I might even try to watch Survivor tonight due to the extra sleep. Woohoo, I am a wild woman.
Wednesday, October 29, 2008
It would have been so much easier if I had been doing this on the computer since week one but I do this most years. I usually get them in there by 5 weeks for mid-quarter marks but I've been in such a bind of rotten feelings that that didn't happen then.
I have one medical note in hand and another should be arriving today in the mail. I drafted my application for sick bank leave approval letter and that needs a tiny tweak. I have put in a second call to my PCP for his letter.
I also called the payroll lady to find out when I was out at the end of last year. I can use all my days for sick/personal this year and go back into last year's dates to try and combine time to get thirty days so I can go without missing a paycheck. My boss, himself, called me and told me about that yesterday afternoon. Wasn't that the nicest thing?
I work with and for some really awesome people. Then again, like all of us, I also work with a few people who are like cats' nails on a sharpened chalk board!
I feel good about making progress with the sick leave and getting grades in. I have a great partner in my Special Education teacher who I speak with daily to see what's going on and where I should focus my planning for the next day. I seem to have a good solid sub in the room teaching who is not a "spineless wonder", which would be a problem in my room.
I will be going back in to work this afternoon to work on typing in grades some more and finishing plans for maybe the rest of the week. It would be awesome to sleep in for at least one or two days this week. I drive to work so exhausted and still all over the place but I get there and back mostly okay.
Not sure if I mentioned this yesterday but Tysabri number two is next Monday and on Tuesday I will be back in the neurologist's office to be checked over. Then I think he will schedule new MRIs as he wanted to do them now but I mentioned that Ty #2 is coming up so maybe we should wait.
That means I can get the hands checked out, the depression noticed, and the mental stuff and fevers looked at again.
PS: I apologize for grammar errors as I have stopped proofreading lately....
Tuesday, October 28, 2008
If anyone can shed light on that please do!
Hands are still off but not burning so that is a plus. I have started the paper work for the sick bank leave. I have one doctor note and a call into my PCP asking for that one. Today I will call the neurologist's office. Perhaps I will try explaining the claw hands and the depression, not that I think I will get anywhere.
My gyn called regarding my vitamin D levels which were low again. Back to the 50,000 IU weekly and then retest to see if it goes back up. I have recently started taking 2,000 IU of D3 daily along with my multivitamin since my 1st Tysabri infusion.
Also super news: My Tysabri is all paid for with my insurance for the rest of the year. I know how lucky I am with that but I will be looking to see what the next EOB's show as being charged to the insurance. Come January I will have to pay my $100 deductible and $400 out of pocket money and then Tysabri will be paid for for the remainder of the year.
I saw my students today which felt good. Many of them hugged me and have made me wonderful cards. Today they will be reading about exacerbations in science from the Keep S'myelin magazine and doing some pseudo-symptom experiments. If nothing else, they will learn a lot about MS this year.
My claw/hands are tired now so I'll call it quits. I hope everyone out there in blogland is doing okay. My depression is still off the charts in a bad way but I am hanging in there the best I can.
Sunday, October 26, 2008
Oh, and add in some burning pain and more clumsiness as you try to complete other tasks like writing a note to your best friend in a touching birthday card. Seems a bit impossible but you have to do it. Now you have a tiny clue as to what this is like at the moment.
Siblings in Iraq: My sister is leaving Mosul (I think) to visit my brother in Baghdad this coming weekend. There's some sort of agreement that allows that sort of thing to happen for siblings in the same military branch once throughout their deployment. My sister had arranged for this a while back because she wasn't going to be home for his wedding next month; the wedding that was just canceled.
Brain thoughts: Jammed up and misdirected, spelling and typing off and multi-tasking almost nil.
Work: Parents are asking what is going on with me and I'm not sure what I'm allowed to say. I must go in each day early and drop off plans and pick up papers and such. In about two weeks I will be fairly free of all of this and then I can work on me and not work on work.
Saturday, October 25, 2008
This has been going on for a good week now but the last few days its on like Donkey Kong by the end of each evening. All the more reason to be taking some time off from work. A teacher with no hands faces some struggles for sure in grading, writing notes, and planning.
A Netflix side note: If you haven't watched "Charlie Wilson's War" yet with Tom Hanks, Julia Roberts, and Philip Seymour Hoffman, please do so. I'd be interested to read if anyone else's eyes were opened by that movie and its connection to the current war.
As Tom Hanks says for Charlie Wilson, "The ball just keeps on bouncing." Wow, food for thought.
Friday, October 24, 2008
My poor brother was supposed to come home from Iraq in three weeks to get married. His devoted fiancee has called off the wedding as of Monday. The problem apparently is that my brother is in the military and his fiancee doesn't like that. She also doesn't want to move to Germany when his time in Iraq is up.
This reminds me of Adam Sandler in "The Wedding Singer" when his fiancee leaves him at the altar and later tells him why and he responds with something akin to the phrase, "Something that could have been brought to my attention yesterday!" Of course, my brother's been in the military since she met him in February so maybe she should have considered that a few months back.....? Just a thought.
I'm tired and not all at the same time. I want to sleep with this depression but my body isn't allowing excessive sleep even without the Provigil. I explained the depression today to my shrink as sitting in a bathtub filled with joy and happiness and someone else pulling the plug while my nekked and distorted flabbo body remains in the tub exposed to all that is wrong with the world.
There's so much that is wacky in my world but I'm too tired to type it all, especially after getting caught up with the whole award thing. Two posts in a night is probably as exhausting as good sex used to be in my life.
I recently received this award from Mandy so I am finally getting around to passing it on. I know some of you have already received this award but you deserve it again!
The rules for giving and receiving this award are as follows:
* Put the logo on your blog or post.
* Nominate at least 10 blogs which show great Attitude and/or Gratitude!
* Be sure to link to your nominees within your post.
* Let them know that they have received this award by commenting on their blog.
* Share the love and link to this post and to the person from whom you received your award. (Maybe throw back a scotch and soda, slap on a toga and dance around a bit. That's just an example of what I did. Weebs)
I am technically challenged as how to make everyone's actual blog name come up so slap me around a bit for my ineptitude. Believe me, the blogs above are good reads too!
Thursday, October 23, 2008
I have been out of work since Monday afternoon when I began round trip number one to my PCP's office. The second round tripper was the next day when I spoke with my original physician. We discussed his partner's idea to cut down on some meds (Hey, why not? Don't I seem to be switching stuff up about every week here lately?) to see if that helps with the mental cognition. I am willing to make some tiny concessions with that and I am cutting the dosage on my Requip and my Seroquel, which I use for sleep and not for its other mental illness properties.
Then we brought out the big guns and talked about "it". It meaning taking a medical leave. I'm going to do it and I have no reason to assume that I won't be approved. Then again, in my world, you should probably never assume anything since I just forgot my PIN number at the grocery store.
I do not have short or long term disability through work and didn't purchase it separately when I started down this path because neuro (loser) #1 insisted that I didn't have MS and the brain lesions were from a teensy concussion I had in 1989 that justallofasudden decided to act up and make my body go nucking futs in 2004. (Highly likely, eh?)
We do have a sick leave bank which I have used before, about five years or so, right before I really started to get ill with my MS and the first big flare. The sick bank will provide me with 100 paid days of leave and my insurance after I use up 30 days of personal, sick, and perhaps unpaid days. I don't have 30 days to carry over this year so this means there will be a bit of a gap in payments.
I don't care.
I feel like my brain is going to fry itself and I'll be the old fat lady in a bathrobe (note to self, find a bathrobe that fits your gigantic body and buy it) muttering to myself about nothing. I sometimes catch myself at home doing the most bizarre things for no reason. Not to mention that marking papers still takes me forever and I have learned to use my calculator to double check my own math work as a 38 year old! I make stupid errors that I don't even catch. It's totally embarrassing.
Hey kids, your teacher is an idiot who can barely read aloud the correct words to you and needs to have someone check her math homework! That's just what every parent wants, right?
The sign from above appeared in note form from a parent on a 5-week report on Tuesday. I found it stapled inside one of my students' Friday folders. It said (in Week 8, by the way) that perhaps I should have more patience with the children and that her son appeared to be unhappy this year.
Well, shiver me timbers! This is from a parent I've never spoken with ever or saw at Open House. It's always amazing how when grades come out the nasty stuff lets fly in the universe. He's a good kid, smart, quiet usually, sick often, and he has some grades that are low for him.
Perhaps if I were more patient....
I'm probably one of the most patient people out there because I can relate to being ill and feeling crappy and feeling overwhelmed. That note, stupid as it was, just made me really think about all that I've put myself through for those children, children that are important and deserve good things but they are not my children.
I love my job normally and my class really isn't horrid, it's just different this year and more challenging. I'm not the me I was even a year ago at this time. I process everything slower, my speech gets messed up, I'm not as able to think on my feet, and I forget things I know how to do. My whole life has become work and how it's not working for me at this time.
Maybe others think it's a failure. I don't know. I'll have to go back and eventually finish out the year in 2009. That will be difficult. The kids will have had a substitute for more time than they will have had me by the time I get back in there. What if no one has confidence in me? What if the parents think I'm an idiot?
What if I get so much better on the Tysabri that I can think straight, feel more positive, become energized like I used to be? What if I enjoy my passion for teaching again?
Wednesday, October 22, 2008
Some good stuff and some not-so-good stuff is going on. I'll try to pass on the award tomorrow. Thanks for all the fly-by readings of this tiny post.
If you haven't noticed, there are some new-to-me blog links over on the side. Check them out, if you have time to kill and desire a myriad of writing styles and topics that somehow relate to MS.
Tuesday, October 21, 2008
I saw the hottie PCP partner yesterday and he ran more bloodwork. I believe the insurance company is going to start watching me closely because I seem to be constantly getting bloodwork done. It's not like I enjoy it or ask for it (okay, I did ask for the gyn to run something) but it gets done. Thank goodness I have some decent insurance.
No UTI, not that I thought I had one but that is generally the first reason people with MS can throw off a fever. Then again the hottie doc reviewed my notes and realized that I had complained of the same thing back in July! July, people. That would have to be one heck of a UTI. I suspect I wouldn't even have a urinary tract anymore if I truly had had a UTI for that long.
Hottie doc asked me what prior neuro had thought about all this. Prior neuro is a prior neuro for a reason. He did nothing and thought nothing. Prior neuro had left me hanging and feeling $hitty since about May.
New neuro's P.A. guy is weird and I am wondering if he is weird with everyone or just with me. The things he says make me wonder if he's ADD without meds. He wanted me to get checked out for infections and viruses that could be spread by munchkins. (And no, I don't have MRSA even though someone in one of our school buildings does.)
Off I went and no infections, bloodwork ordered, told to stay home today and return for a repeat visit of sorts. Hottie doc thinks some of my problems is the enormous amount of meds I am on. So he wants to whittle away at the list.
The only really new stuff is off my old AD and on 2 new ones at very low doses, one of which I was on before, plus a Xanax dosage increase. I know just about everything I take, except Provigil, makes people tired and/or dizzy. I've been on this stuff forever.
I called Psych R.N. last night and left a message about the med whittling but I think he is in his other office today so I suspect I won't hear from him until Wednesday. He's the one managing most of my meds.
Then I need to call the neuro's office today (which I didn't do yesterday, bad Weeble) and tell them what today's visit brings. I expect it to be somewhat like a poker game. I'll give up Seroquel and cut down on Baclofen if you give me sleeping med X that will run through my system in less than ten hours. I'm willing to cut down on Xanax and double Provigil to 400 mg again but I will not give up Abilify and Lexapro. Plus, he wants to raise my blood pressure meds and add in a diuretic. (The only place I have high BP is their office, honest.) Maybe I can try to cut down on Requip. (I already took myself off Klonopin.)
He thinks all the pharmacological stuff is making me more cog foggy. I don't really buy that. I think part of it is the depression, part the demands of being in this higher stress inclusion classroom, and part due to MS. I don't think it's the meds that make me forget how to divide or teach or name items or drive properly or spell and type (You should see the first version of my post, holey moley Blogreaders!). Then again, I have been wrong before.
Hottie doc says it could be a flare and maybe we need a new MRI. It may be a flare but I'll wait on the MRI for another few months on Tysabri, thanks. I still don't even know what the infusion palace center's costs are yet. Every time I get an EOB (explanation of benefits) I panic a a bit because the costs have the ability to be rather large, as some of you Tysabri people know.
**The good news is I've had three days without purging. I'm still way behind on grading but I did a tiny bit this morning. Oh, and BJM has an answer to her medical dilemma and it's not MS which means I can also throw out my Rebif and Copaxone bags of stuff/crap because she won't need them, thank the person upstairs. I also cleaned more and threw out more stuff/crap last night.
I hope that I can get a good nap in this afternoon.
Monday, October 20, 2008
Then I started to swagger and sway again. My mind was muddled and I forgot what I was saying in ELA and how to divide during math class. My right hand is showing some residual weakness from time to time and I have a recurrent buzzing patch on my left thigh. My calves are also getting in on the act with some mini twitches to keep me awake. Have I mentioned the fatigue? It's also not acting nicely and it's making me so wacky I can't even understand myself.
So today is a half sick-day to try and get an answer to this medical melodrama.
I am off to see my Primary Care Physician's partner, they both have the same first name and both are well over 6 feet tall, but I will hang my head low and admit the partner is a tad hotter (Oh, lucky me!). I have called the neuro's office and the guy I see just returned my call and I'm to call them back once I know more info.
Then we'll see if I just have some creeping crud, virus-wise from my students, or an infection somewhere, or maybe MS acting up all on its own. For those of you who don't know, viruses and infections especially can wreak havoc on one's system when you have MS.
I'll let you know what ends up happening in my neck of the woods.
Sunday, October 19, 2008
I seem to be off kilter and smacking into things, not by choice but by accident. There seems to be more random dizziness. The cognitive stuff may also be tied into this. Stuff I know that I know is throwing me off, like driving the car and working online. Little things that I black out on mentally and panic for a second (or two or ten) and then it comes back to me. The difficulty with driving and staying on the road and focusing on that may be a part of this. I notice more weakness with my right hand/arm.
I have been noticing my fever has been on the upper end of the low-grade area most of the time lately (about 100.5 degrees or so). Maybe I have a UTI or some other infection that I don't know exists. I think if I am still like this tomorrow then I need to call the neurologist and maybe my PCP, too.
I did a lot yesterday but I don't think that is the only reason I feel tired out. I don't take Provigil on the weekends so that could be a part of it but this was going on during the regular work week also.
In good news, there was no binging and purging at all yesterday. All of the laundry is now done with a second load spinning around in the dryer as I type this. I called QVC this morning and ordered some Spanx and some dresses to try on for my brother's wedding next month. I even emailed his future fiancee last night which is a big step for me. (I'm insanely jealous of her as she has basically replaced me in my dysfunctional family.)
It's all baby steps as they professed in that movie "What About Bob?" that was filmed in VA when I was a freshman in college there.
Saturday, October 18, 2008
Part of it might have been the horrible steam/boiler/hot water heater repeat incident from last night. I mentioned calling the fire department a few Sundays ago and it was for the same thing. This time the people upstairs were home and they came running down the stairs to see that I was absolutely not setting off fireworks and surface-to-air missiles. The steam was pouring out and up the stairs, it smelled horrid, and it sounded like 78 MRI machines all banging and clanging and hissing at the same time.
This time when I called the "super" (and I am using this term loosely) he actually called me back even though he was already well on his way to being trashed at 8:30 p.m. He slurred through his message and sent someone over to look at it. This same person has been here looking at the dang thing for weeks now and it still acts up. I'm afraid the place is just going to blow up one of these days.
Eventually I did get to sleep, even after forcing myself to finish reading a book I didn't want to finish but sleep beggars cannot be choosers when one is trying to force themselves to pass out.
Today I woke up too early thanks to my wonder feline who can and does sleep anywhere. He wanted to be fed. Now. Not in an half hour. Now. Now! Now! Now!
I got up because it was easier than suffocating myself with a pillow and I had dropped the water sprayer I use on wonder feline to buy a few more minutes of sleep behind the bed. I couldn't reach it because I have a sleigh type bed with all those little tiny slats that my fat arm can't fit through.
After feeding wonder feline, I showered and went off to the hospital. I was there at 8:15 for bloodwork after throwing in a load of laundry back at the apartment. I came back, clipped coupons from several weeks back, packed a box to mail to my college pal in ME, filled out a Hoops and Yoyo card for BJM (whose birthday I had forgotten much earlier this month), called her, and then off to the car I traversed again.
I finished more errands (groceries, PO, library drop box, bank) and came home to nap. This time I could sleep, thank goodness. Upon waking I cut up veggies and stuff to make a homemade lasagna. It has recently finished cooking and looks and smells divine. My goal for the rest of the weekend is no purging and occasionally attempting to smile.
I may even consider going to see a movie tomorrow. Considering doesn't mean going but it's just one of a series of baby steps I'm practicing.
It's much nicer to feel this way rather than ruminating on the cold steel taste of a revolver in the mouth or a long perpendicular cut down your arm. For what it's worth, I'll take feeling a little better.
Friday, October 17, 2008
Driving home was surreal, as if it wasn't me actually driving the car but rather me in the passenger's seat watching everything going on. Needless to say, that's not really what you want when you are actually the driver so I tried to pay close attention to what I was doing. I was still all over the place but I made it home and no one got hurt.
I am so glad that the weekend is here. I have to go to the hospital tomorrow for some quick bloodwork and there is much laundry to be done. I also need to figure out what I am going to do with the black work pants I have that need a new a zipper. Try and get them fixed or just throw them out?
Thankfully, because I am a big girl, I wear long shirts to "pretend" to hide the fact that I am gigantic. That was handy when my zipper would no longer go up at work last week because of a catch in the zipper's teeth. The other good part of that whole deal was that it happened after the school day was done, leaving me chuckling to myself in the bathroom and probably making passersby wonder what exactly was going on in there. (After all, our P and VP were let go last year after what was reported to be adulterous activity with each other and he was married.)
I think I can report that I feel a small, minute, teensy bit better psychologically so that's a plus. I'm not yelling this from the rooftops or anything but maybe the meds and the fact that it's Friday are combining to create a semi-happy mini-moment.
I'm still binging and purging daily. I don't really plan to do so, it just reaches that moment where I feel full and off I go. I hardly eat lunch at all now and today's lunch was an ounce of cheese and a small can of tomato juice. I really need to get in and talk with my psychologist but that appointment was canceled today and moved to next Friday. Sigh, I guess I am not the most important person in the world.
In random bits, one of my students came to me today to chat (after being pizzed off when I didn't let him go to chorus on time because of so much late work lately) and brought up the new movie called "The Express". I'm not sure if anyone out there has heard about it, but where I live they actually rolled out the orange carpet (yes, I said orange) and premiered the movie here a few weeks back.
Regardless, the movie is about (methinks) a Syracuse University football player named Ernie Davis. I think, the story goes, he was the first black male who played college football during the deep, dark days of our country's segregationist past. In class, we have been talking about Rosa Parks, Dr. Martin Luther King Jr., and Ruby Bridges: all black Americans who used nonviolence to help get this country out of the separate but equal thinking that the old days allowed.
Anyway, my student went and saw the movie with his mom and he told me he really liked it. We had a discussion about the fact that this movie is not fiction and this was a real person. He said his mom cried as she watched it. I asked him if he told his mom what we had been talking and learning about in regards to segregation. He responded in the affirmative and said his mom was surprised.
So friends and blog readers, there was an honest to goodness real life connection from school to life made by a ten year old and I had something to do with it. I'll take any kudos I can because they come so infrequently.
Yes, I know that the special education teacher who works with me has the day off and I have zero idea who my substitute will be, but somehow I am assuming that person will feel overwhelmed with all the special needs in my room.
Yes, I know that one of my darlings who pushed another teacher yesterday will be here today because he only had a half day of out-of-school-suspension.
Yes, I know that I need to get off here, get myself dressed (jeans are okay and it's in the 50s), and I will comply with the world's expectations. I will go to work and do my "thing". I just hope I can make it to the end of the day without any blood shed, not mine and not any that belongs to people under eighteen.
I'll let you know how it goes.
Wednesday, October 15, 2008
I keep thinking that if I take some time off now to readjust and feel better, feel well, feel something other than crappy then maybe that's what I need to do.
I'm not sure if I need more Ritalin or if I should switch back to my Provigil to get my morning dose of wake-up juice. My Ritalin is almost out and the Psych R.N. doesn't remember that he was the last one who wrote the script. I have so many scripts and different script writers, that I have a hard time remembering who prescribed what and when. Today I crossed the line a few times and then almost went off the side of the road because I was so tired on my way to school.
Then I came home and binged and purged on purpose and it so wasn't worth it. I rested a bit while reading and then took out the air conditioner from my bedroom window, a somewhat monumental task. I did some exercising while making copies for math on my copier. Then it was time for my nightly med parade. Now I am hoping for deep slumber soon to get me through to the next day.
Thursday really is my sister's birthday, a quarter of a century on this third rock from the sun. I need to mail out her package after work. She's still serving in Iraq and it's been a year since she's been home. I miss her a lot and wish I could see her face when she opens up her random goodies. I suspect that anything is a treat over there and it has to be better than a horrible sandstorm kicking up dust in your eye.
Tuesday, October 14, 2008
I made it to the gyn appointment and he is going to run some more bloodwork on me, Vitamin D and my hormone levels. Maybe that will explain my almost constant fevers and fatigue. I have recently started to take 2000 IU of D3 daily along with the multivitamin daily, since the Tysabri infusion, per that doctor's orders.
I also found out that although I am still the fattest person I know, I have lost about eight pounds. I guess that comes with not eating much. I finally threw out the cheesecake, almost a crime, I know. My goal is for my fridge to be almost empty except for milk, lots of water, condiments, and maybe just a few actual pieces of food.
I am trying to not purchase much new food and I have some things in the freezer and soups and such that I can eat. I am usually eating cereal at lunch and then something small at dinner time. I am trying to not do the purge thing and just restrict the rest of this.
I only took out real garbage and recyclables to to the dumpster area tonight, no time for cleaning and bagging up the mess that seems to be smothering me. I also took a nap when I came home from the doctor's office and I have just finished typing up a new worksheet for ELA and making a new decimals unit test that is still printing out on my copier.
I am eager to speak with my psychologist on Friday to discuss all these new aspects to this depression. I still only allow myself music in the car or TV on at home at certain times. I used to like the sound but now it bothers and distracts me, it's like I have to earn the privilege. I have all these rules I made up that make no sense, maybe to try to control some part of me when I feel as if everything else is whirling away from me.
I reach out for it but it's just beyond my grasp.
I look and act happy around others but I don't feel it inside at all. I prefer to be quiet, solemn, asleep if at all possible. Three more days, three more days and then I can talk and see if I can find some answers.
I am showered and all doped up: Xanaxed, Ritalined, Abilified, and Lexaproed! (Look, I made verbs out of nouns; I am so clever!)
I am ready to go to work in my shorts (it will be almost 80 today which sucks for me because my body hates the heat) and do my Quiet Weeble Sunshine routine. I will answer your questions at work. I will say that it sucks that the weekend is over. I will say, "Yes, it went too fast." I'll do all those things that are expected of me. I always do.
I did a 2 mile walking DVD in my apartment yesterday and then went in to mass cleaning and throwing crap out mode. I jammed six more garbage bags and a few smaller bags filled with new and/or other good stuff that I don't want or need and made several trips up the stairs and out to the dumpster. Too bad you didn't know where I live as there are some Halloweeny things packed in there. Dumpster diver man will be salivating at the very sight of all those see-through bags neatly stacked up for him!
There are more things that were sorted that need to go in the actual trash dumpster as trash but that may have to wait. Tomorrow is real deal school and I must prepare myself with plans and papers and such.
In other good news, my neurologist did call me back yesterday and we talked about the depression. He's satisfied that I have two other people working on that part of me. Also, the blood vessels on my face are no longer blotchy and angry red so my skin looks much nicer. My new hair color and the fact that I washed it today means progress on the hairdo front. I am on new medicines that will work, will work, will work, must work. I paid some bills last evening so they can go in the mail today. And, I shaved my legs a few days ago for my visit to the gynecologist today.
Breathe in, out, repeat. Thank goodness we do that automatically.
**Thanks again for all the positive comments from those of you who post them here or email me. I do appreciate it even though I sound like an evil witch most of the time. I am working towards making my life tolerable and less punishing. Your words of encouragement always help.
(And especially for BJM, hang in there girl. I'm hoping we won't be MS sisters but hey, I know how to hook up those IVs like a pro. Horrible joke there, feel free to cause me bodily harm when we see each other next.)
Monday, October 13, 2008
The self-punishment aspect of this depression is strong, like a ferocious dog who has his favorite toy in his mouth and he's unwilling to give it up no matter how hard you try to pull it away. His teeth have chomped down tightly on it and his head is shaking from side to side and he's growling, trying to tell you to leave his toy alone.
Last night, I gathered up two large garbage bags of stuff, plus two large bags of books and dragged it up the stairs and out to the dumpster for the dumpster diver man. He will think he's found garbage utopia with all my stuff neatly bagged and ready to go. I even thoughtfully placed the bags outside the dumpster making the grab and go part of his routine even easier.
I stayed up late again last night and finally allowed myself to eat after a horrendous food episode earlier in the day. The broken blood vessels make me look like I have really bad zits on my normally clear skin. It's freakish but a reminder to me that when I look in the mirror I shouldn't be so smug and think that I am doing well, because I am not.
Some of you have left me comments about taking meds for this and I do take meds.
Updated after visiting the Psych R.N. this morning:
I had called and left a message around 8 a.m. at the Psych R.N.'s office about my downward spiral and he returned my call shortly afterward, so he asked me to come in ASAP, which I did wearing clothes from yesterday and taking no shower.
He has changed my meds and removed the Wellbutrin XL as that may be behind the suicidal ideation at that higher dosage. Plus, it's one of those drugs you don't give to people who purge because they can seriously cause some damage with seizures and such.
I am now on Lexapro, which I have been on before, and Abilify (something new for me), plus the Xanax. I am to call him on Thursday or Friday and let him know if I am feeling any better. I also see my talk therapist/psychologist on Friday and we'll have sooooooooo much to talk about.
I look like a woman come undone and I sound like one when I talk and I'm not pretending to be fake. I sat with my hair sticking up at the pharmacy with sunglasses on, reading while waiting for a new round of scripts to be filled, designed to make me feel better, or at least not allow me to feel any worse.
I came home and took a nap which was nice, although I'm still tired. I also called my neurologist's office as depression can be a side effect of Tysabri and I wanted to update them on my new med changes. The nice phone receptionist said she would leave a message for the doctor so we'll see if he actually calls back tonight.
I do have to work tomorrow but not with kids, so that is a huge plus. I reached out and asked for help and I'll just take it day-by-day again. Perhaps this new drug cocktail will be the one that wakes me up and shakes off this horrible overcoat of pain and sadness. That's what I'm hoping.
Sunday, October 12, 2008
Hell, I know I am worse. My sleeping is effected by all of this. My eating is effected by all of this. I am crying again. There are times when I am filled with such incredible rage for no real reason at all. My face is a complete mess from the broken blood vessels of purging up what I have eaten.
I've taken two 1 mg Xanax pills today plus 450mg of Wellbutrin XL and it feels like the second Xanax is calming me down a bit. I just dyed my hair to rid the grey and made a big mess while doing so. I cleaned it up but everywhere I look in this apartment is another mess. Papers and books and crap piled around for work and bill paying and stuff that needs to be sent out.
I threw out a bag of stuff last night for the man who goes dumpster diving in our apartments' dumpster. He literally climbs in and opens up bags. That is so disgusting and a clear message that you should shred anything with your name, address and any other pertinent information on it.
I am going to start bagging up crap in my bedroom because I cannot wear most of my shoes anymore. I can easily throw out purses and shoes so this guy can take them and do what ever it is he does with the stuff he claims.
Last night I cleaned out another area and shredded lots of medical things that needed to be shredded. I feel caged in my apartment and the walls are closing in. I want stuff out of my apartment. All these stupid cutesy knickknacks and crap must go. No one ever comes here, except delivery people and maybe two or three other people a year.
My apartment is not a "let's hang out and do something fun" place. I used to feel safe here but I don't anymore. The agitation continues to build and my anger (at what?) is growing. I keep punishing myself, maybe because I can't be the good teacher I used to be. I can't hold a thought like I used to be able to do. I can't generate any more fake happiness until it's time to go to work on Tuesday.
I think Denver Refashionista (a reader and great blogger in her own right) is correct in saying that controlling one's breath can be helpful in trying to stay calm. I will try to focus on the breaths I take and hope that there is some way through this mess. I do not know why it is here now, why this depression is so deep, why it involves such deep anger and self-punishment.
I feel like a freak compared to others. I remember the last two times I clearly felt this dead inside: the first was in 2000 when I was starting a new job after having left my husband, moved, and started divorce proceedings, and the second was in December of 1999 before I left him for good. I moved out and stayed in a hotel for a while without telling other people. When I returned home I was doing so only out of financial necessity. That Christmas I recall seeing my parents shopping at the mall. I looked and felt like this, not knowing what to buy, not caring.
I recall that dead feeling. That heavy load of shame on my shoulders all the time. The desperate need for help but not knowing how to fix things. Those were times with specific plans and an almost guaranteed ticket to the psych ward. That's something I can't have, that chance to be away and try to just focus on me. I have to work and will work and I will pretend that I love it. Then I will come home and continue to find ways to punish myself because I cannot snap out of this depression.
I hope things are much better in your world.
Saturday, October 11, 2008
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.
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!
Wednesday, October 8, 2008
Two more days of work and then a three-day weekend and another professional day after that with no kids. That means next week will also be a short teaching week. I suspect that will be best for me as it may hopefully keep some of the panic away.
It's amazing how much this depression takes away from me, especially in conjunction with the cognitive issues of MS. The panic becomes overwhelming for no real reason. The meds just mask it all and allow me to be productive. Take away the meds and it all falls apart.
Day two post-Tysabri found me slightly dizzy on and off throughout the day and my low back aches, and no, it is not PMS.
I am wondering what the cost will be for my infusion palace. I hope it's affordable because it truly is a lovely place. If anyone wants to ride along one of these days and view the coffee bar, let me know.
I'm still having trouble falling asleep at night. I chock that up to the mental issues rolling around at the moment.
That's all I've got. I hope things are well in your part of the cyber world.
Tuesday, October 7, 2008
I took today off as I was dizzy this morning and tired out after Tysabri day. Plus, I was panicking last night and cried again about work, after not crying for a few days. I know I "look" okay to everyone else but inside I feel like it's a freeway backed up in California at rush hour. My thoughts are sometimes racing each other for an open spot and other times they're non-existent.
The Tysabri thing was a breeze. The worst part was waiting an hour for the doctor himself to come in and introduce himself before the infusion started. The place I go to is a palace. It's an infusion paradise. It has a chandelier in the waiting room. It is decorated as if it's a new showcase home that someone is trying to entice you to buy. There is wainscoting for crying out loud.
You get infused in your own little private suite. They have these funky chairs that are better than recliners but hard to climb in when you're five feet tall and about the same width. The doctor himself got me in the hand on the first stick. I could watch my own TV and or bring a DVD to watch if I so desired. They have remotes and the sound comes out by the back of your chair near your ears.
They have a coffee "bar" with coffee (duh), hot chocolate, and juice. I think there were some cookies or crackers there too. Nice big bathrooms if you must drag your IV pole with you and relieve yourself before the infusion is over.
Two nurses' stations to take care of what I think are about 16 suites. Lots of nurses always walking around with their timers checking on people. I was in suite number 7. Must be my lucky day, huh?
There is a real drape type thing to close off your suite for the most part. You get a pillow and a blanket, if you want one. You have a call button just like if you were in the hospital. People are constantly monitoring everyone in there.
The infusions are not only for Tysabri. A teenager was there for some blood/iron transfusion. The guy next to me was getting his IV Solumedrol and unfortunately having all sorts of problems while that was happening. The nurses never acted like he was an imposition. There were children there and older people there hooked up to IVs. The nurses called the doctor over from the other side of his building whenever he was needed and he came.
The building itself is both a pediatric place and an infusion place. The infusion doctor is a pediatric oncologist, I think, by training. He built this palace to make it nicer for both children and anyone who needs any type of infusion. The offices are even done up the way the rest of the place is. It's amazing; I cannot say this enough. This is way better than having it done improperly by my previous neuro in his office while not following the TOUCH protocol.
Infusion doctor/semi-god is telling me that his current patients are seeing a change somewhere between the 2nd to the 4th infusion. He infused Tysabri before it was taken off the market and strongly believes in it, based on his patients' anecdotal experiences. He has asked me to take 2000 IU of D3 daily. He also wants me on a multivitamin with iron. He's a believer in that sort of stuff. He recommends the vitamin D to anyone in this area (the Northeast US).
So today I am dizzy and tired and still depressed. That last part is great for my eating, or rather lack of eating. Cheesecake and Pringles are still here. Yesterday I had 2 small slices of pizza and a half cup of cereal with milk and some water. I also ate a few almonds while infusing.
I'm still having some trouble falling asleep at night. I attribute this to the depression. I prefer to be alone but I am lonely. I still feel like I am in the pit of despair and I don't know how I can fix it to make everyone happier. I feel like each day is another day I move farther away from the human race. I only feel safe in my apartment. Going out into humanity is frightening. Everyone expects things that I just can't give now. The increase in meds have made life easier chemically but the panic and depression are still there like bubbling magma waiting to shoot out the volcano.
Now I am going to rest because I need to do so. I hope your day is going well wherever this finds you. And, of course, to my friend BJM I am so sorry I am such a dolt. I don't even have a card yet. I feel really bad about all of this.
Monday, October 6, 2008
I guess it must be the Tysabri infusion doing it to me.
I've had IV Solumedrol and I know how to hook up an IV with meds and flush the lines. Heck, I have worked teaching and hooked up to an IV pole, dragging it around the room. As a complete aside, not all IV poles are created equal. If you get a "bad" one you know it. The last one I had kept twirling itself around, maniacally ramming me in my sandaled feet. Ouch.
I've taken Copaxone for almost the first two years of my diagnosis which meant daily shots. My first shot was on Christmas Eve, alone in my apartment, but I just wanted to get it started. Then I later took Rebif for my thrice-weekly torture pricks that make you feel like dried dung in an African desert.
But this one measly infusion kept me awake until almost midnight and then it had the gall to keep me tossing and turning when I finally could get to sleep.
I feel as if there is so much riding on this one medication. Will it make me better? Will it slow down my multiple sclerosis? Will I have an allergic reaction to it? What will I feel like later on? What will I feel like today while I'm there and then after when I come home?
Oh my good golly, too much for me to be thinking about here. It's one medication but I am hoping for a miracle. Is it too much to ask for my life back?
Can I follow through on tasks that I started? Can I deal with the heat of late spring and summer like a normal person instead of having to hide inside like a vampire, minus the cool cape and the blood-drinking thing? Will I be able to walk a reasonable distance, say from my room to the teachers' room, without limping and spasming like a cowboy who has been riding his horse for far too long ? Can I think clearly again? Will I stop living in this pit of depression where everything in life overwhelms me?
Look at me asking for all of these things to make my life better. How selfish can one person be while enjoying the slow spin on this third rock from the sun? As selfish as she wants to be, I reckon.
If you happen to be reading this and you're of the prayerful sort, I wouldn't mind someone throwing up some positive vibes for me around 1:30 this afternoon. Maybe I'll sleep better tonight.