A Lone MS Journey

Happy Holidays!

2010-12-24T08:09:00.003-05:00

Tonight I'll drink a toast! A toast to my parents (my God rest their souls) who, when I was a child, did everything in their power to make Christmas magical for me and my brother and sister. A toast of thanks for such joy, such wonder, such magic!

You see? This year is the first holiday season that I will be without either parent around. Yes, I miss them, but now I'm free to start my own traditions, build my own Christmas happiness and joy, eliminate the pressures and guilts that go with all the "family crap" that seems to seep into all holiday "celebrations(?)"! I can do what I want, when I want (maybe) and not be tied to all sorts of imagined expectations and limits!

Much joy to be had!

But, then reality smacks me backhanded across the face. Knocks me back. Wakes me up. This body that my spirit chose to live in is doing some pretty nasty things to itself this morning and for the past three or four days. Massive pains throughout for no pin-point-able reason--it has to be the MS acting up. Shooting pains in various spots in my left leg, my left hand and arm, my right foot and calf. Not to mention the dull headache that just doesn't seem to go away at all.

My left leg, all last night was cramping up so badly that it woke me from a sound sleep a couple of times. No position allowed relief. Then after the main cramp was gone, the little spasms continued for several hours, only now settling down after walking the dog. The right leg was only doing the spasms stuff, complementing the cramp in the left. I spent pretty much all night wondering if I'd be able to walk this morning.

Then, another major hypoglycemic attack where my sugars plummeted quite quickly this time. Still no real "hypo" signs but for the slight lightheaded and my sensor/pump beeping wildly! Thank goodness for sensors and beepings and such! When I did get downstairs to get a meter reading of sugar level, I was quite shocked to see the 44. Not 444, just 44 -- no wonder the sensor was going off! I ate a ton of jelly beans (too many for sure) then headed back up to try to get some sleep, but the MS stuff kicked in and the rest is history!

Enjoy! and Merry Christmas!

2010-12-14T07:03:00.003-05:00

Well, it's official! I'm tired of being ill. Just flat out tired of it!

What can I do about it? Not much. The word "futile" comes to mind immediately because out of all the things I've tried to help myself feel better, nothing seems to work or work well for any period of time. Oh, I'll keep plugging along, but it's becoming so very hard. It takes too much energy.

But! Tomorrow is coming! Maybe, just maybe....

2010-12-12T09:03:00.002-05:00

Hello! Long time no post.

I know, I know, but a lot of shit has happened since Feb 1. My mom did pass, eventually, on February 25. She went through one hell of a month and as I found out, pretty much because my ...sarcasm hat on... dear sweet darling wonderful fabulous ...sarcasm hat off... brother never showed the hospital or her doctors or the nursing home or anyone "in charge" her Living Will. It clearly stated that she did NOT want to be hooked up to the life-saving devices OR intubated for sure! But she was and suffered because of it. Very sad all around. On top of all that, my hands were tied--at the time I could do nothing. I wasn't "welcome" in "their" home at all, so going barging in and grabbing the papers myself was out of the question. Plus, I was scared to death that my brother would shoot me. He had a gun.

Long story short, after this trauma, drama, and general bullshit, my brother caved when he realized that the rental company was kicking him out of the apartment my mom had rented for so many years. Yep, he had to do something so (drum-roll please) duh-ta-da-dum! Me to the rescue!

He signed all powers over to me, so I inherited all the paperwork! But, as it turns out, if I hadn't have stepped in, or wasn't willing to step in, nothing would've gotten done! Well, since then all has settled down regarding the paperwork and now all I'm looking at is the final tax returns and final estate return which I can file come January 1st.

It's strange...yesterday I awoke with a very deep, profound sense of loss, but for the life of me couldn't figure out what it was all about, until now. It's the finality of my mom's estate, the closing the door on a life well-lived. Sad.

Anyway, throughout the year my MS has progressed with flare-ups throughout--I wonder why?--with a major relapse that started October 2nd. It was then that I had two days of "oh my God, make it stop!!!" vertigo and dizziness almost to the point of throwing up. Then all sorts of new pains, spasms, numbness started all over again. It was shortly after those couple of days that I started thinking about re-trying the Copaxone and maybe getting back to physical therapy, but nothing came of it until November. Wow!!! Time goes by so quickly when you're having so much fun! Right? This is fun, right? Living is fun? Maybe? Constant pain is fun? Or am I deluding myself?

It was November 7th that I finally listened to all those Copaxone syringes, screaming at me from the fridge, "Take ME! Take ME! No, take ME! We can help!"

And you know what? They did help!

Next, it was going back to physical therapy and that happened shortly after my first-again shot, oh about three days after even. With more than three months off, it was quite painful in and of itself. I'm very glad about it, though. Now, I really just need to get back into a routine.

I believe THAT relapse ended, finally, on December 2nd. I've actually been feeling pretty good this last week, with only minor twitches or pains or spasms. But, sadly, my right side is starting to show signs of MS too....

Onward! and enjoy!

2010-02-01T17:54:00.000-05:00

My thoughts for my blog this Monday, February 1, 2010:

Was a tough weekend, although very fulfilling. My mother isn’t well at all anymore. I shall be an orphan by the end of today, or end of tomorrow.

You see? It was 10 years ago, this past Saturday that my father passed away. Ominous day that day was, and now this past Saturday saw us getting a huge snowstorm. Around 10” fell here, so we had to cancel pretty much any plans we had had for that day. We pushed our original plan of heading out to Germantown to see my son’s new apartment back to this past Sunday, to allow for the road-crews to get the roads back into decent shape. As it turns out, that was about the bestest thing to have ever happened!

In the meantime, it was later that Saturday evening, that we found out that my brother had the nursing home/rehab center send my mom back to the hospital—she was non-responsive and as I found out later, had been so for more than a full day. She has COPD and emphysema so these CO2 build-ups in her blood have happened a couple times prior.

Well, the hospital is on the way to Germantown, so, yesterday we stopped in to see her and assess just what state of being she is in. Luckily, my brother was there in the room with her so I got a chance to talk with him. He has full charge of my mom through her Power of Attorney and naming him as Executor of her Will. But, with my brother being my brother, I get no information from him easily. When I saw my mom, she was intubated and the machine was doing the breathing for her. Apparently, my brother had to go through the exact same thing, decision-making process, that I had to go through when I was caring for my dad, 10 years ago. It’s probably the hardest choice anyone has to make in their lifetime…intubate your parent, or let them go. Back then? I chose to let my dad pass with dignity, grace, and peace. My brother chose to intubate. When I saw my mother, she was in agony, couldn’t truly open her eyes and when she did, they rolled back. I was not pleased to see her in that condition. I felt horribly helpless.

But, in the end, looking back, I believe I knew she had already gone and what I saw in the hospital bed was only a shell of a human being, not my mother. Her spirit visited me in my sleep on Friday night/Saturday morning (I can’t remember the time, I was asleep). That spirit told me that she was fine now, was getting up out of her pose on a divan, much like Marilyn Monroe did in films etc., swung her legs around, stood up, said to me, “see? I’m fine!” and then was gone. Thinking back on it now, that’s sending chills up my spine because several weeks back I had told my mom that her sister, my aunt, would come for her on a Saturday in the wee hours of the morning. So, yes, what I saw yesterday in the hospital bed wasn’t my mother, she was already at peace, but her body was fighting those tubes and air-demons and had to be in excruciating pain. There was a frown on her forehead, etched in between her eyebrows.

Before I left, I kissed her on the forehead, much like I did my father before he passed and whispered to her to relax and let the doctors do what they do best, and if I “don’t see you in a couple of days, I’ll see you in heaven. And oh, by the way, tell to stop with the lightning bolts, those are getting quite annoying.”

Speed forward to today: I called hospital to get a status on her this morning, but the nurse said that he couldn’t give me any information about my mom because my brother is in charge and he asked them to not give any information out to anyone that called. Oh, goodie!!!

I called my aunt and it was her husband, my uncle-by-marriage, who called my brother to get the information I was looking for, plus some other stuff—the doctors, nurses and my brother were to have a meeting at the hospital this afternoon to decide on whether or not to remove the breathing tube.

I am now, sitting in front of my computer, waiting for that phone call from either my aunt or brother. I’ve said prayers all along that my mom go in peace (she didn’t deserve this torture), so now, maybe, hopefully, those prayers will be answered.

Now I lay me down to sleep, I pray the Lord my soul to keep, and if I die before I wake, I pray the Lord my soul to take. God bless mommie, daddie, my granmas and my granpas, my aunts and uncles and cousins and all the people in the world that love me and all the people in the world that I love. And, God bless me, too, Amen.

May God bless us all

2010-01-19T11:02:00.001-05:00

Robins!!! Robins are back! I saw a robin as I was returning from the grocery! Joyful sign! Wonderful day!

Celebrate!

2010-01-19T08:10:00.002-05:00

I think I'm a survivor. No, wait, I think I'm going crazy! Yeah! Going completely nutzoid, crazy! There, that feels better.

Lots happening, lots is new stuff, I'm going to skip details. My conclusion? We, as the human race, need to do something about the final days of our older folks who are in pain, have made very poor choices, yet are so very stubborn that "fixing" those choices is out of the question. What that something is...I really don't know. I have no clue as to where to start, but we treat our pets more humanely than we treat our seniors. We treat horses and livestock better than we treat our parents. (By "we" I mean some of us, not all.)

There are just so many rules and regulations and oaths and privacy laws that doctors, hospitals, lawyers, courts, insurance companies, governments and churches (yes, religion) have in place, yet few address the growing problem of "dying with dignity". Ever hear of that? Very controversial. Which is why I'm not going into details.

Fact 1: we are all going to die. Period. 'nuff said.

Oh alright, I'll continue...
Fact 2: none of us know when.
Fact 3: few of us have any clue as to what happens at that moment. Please note I said FEW, not none. Those of us who have had NDE's do know, are privy to that clue.
Fact 4: we must pay taxes.

Which brings me to tax time! Oh goodie! I'll leave that for later. Maybe for a time that's more conducive to thinking...oh yeah! The MS is robbing me of my thinking skills. Finding the right words for the right meaning of what I'm trying to say is getting harder. If anything I type here offends anyone at any level, I'm sorry.

Enjoy!

2009-11-09T15:33:00.003-05:00

Oh, bummer!
Just got back from a check-up at my endocrinologist and it seems that the crossover between diabetes and MS is showing--big time. My left foot is pretty much entirely numb and the knuckles cannot feel the tuning fork that doctors use to see if there is nerve damage, neuropathy. It's there and I cried. You see, in August (my last check-up) there was plenty of feeling in that foot compared to my right foot that was found to have neuropathy in it way back about 10 years ago. Now, the right one feels the vibrations way longer than the left foot.

Have I ever mentioned that I'm very sensitive about my toes? NO ONE touches my feet! NO ONE! Even me, myself, and I have a tough time washing the tootsies with soap and water. They are just too ticklish for anyone's good! But doctors insist on touching them, feeling them (for pulses etc.) and that drives me crazy! Now one is "dead" and I must grieve for the loss...and must concentrate (even harder) NO distractions!

Enjoy!

2009-11-07T08:28:00.002-05:00

First frost!

And right in time too! Was beginning to wonder if the robins left early for no reason at all, but it seems they know more about nature than I.

The landscape company that our association hires for yard work, did the first half of the leaf-blowing for this year yesterday. But to look at the streets and sidewalks today, you'd have thought that nothing happened. Translation? We have a lot of deciduous trees around here. We didn't get much of a color show this year either due to the heavy week-long rains of last week, but now it's onward to snow time!

My allergies will begin to calm down now, thank goodness! I survived!

The MS is doing ok, but new pains shooting along spinal cord between shoulders has me a bit, yes only a little bit, worried. Am guessing that a new MRI would be nice, might show the cause, but I really am in no mood to go through that anytime soon. This last week, though, even more scary, I had another coughing spell at a restaurant. Embarrassing. You see, swallowing food and drinks is getting harder and harder. Must concentrate--NO distractions! This time a piece of peppercorn lodged in the area in the back of my mouth, top of my throat, that I cannot feel easily, cannot clear easily, but with it being a peppercorn, every pore that shoots out saliva, snot, or tears did so and before I knew it, I could barely breathe, needed a tissue, a towel, and a hiding place. The most scary part for me is looking forward to those occasions becoming more and more prevalent! Not fun.

Anyway, back to the fun stuff--Xbox 360 games! Am in the middle of the newest game, Borderlands, and am having a good time with it. I never thought that shooting baddies could be so rewarding or fun! Gamerscore has to be the best idea ever! Chasing after meaningless points that total to an ambiguous number...geezh! Fun!

There's a family thing going on in the background that I need to think on a bit more. The one beauty of losing one's memory is that even bad things can be forgotten about and not fretted over too much because I can't remember which it was that I was so worried about in the first place! Yes, there are blessings in losses.

Back to coffee, breakfast and figuring out which quest to do next in a video, er, console game!

Enjoy!

2009-11-03T07:26:00.003-05:00

Ahhh, the wonders of fall!

Was lucky enough, this morning to see a moonset. Not my first, mind you, but another special moment that I feel lucky enough to see! And it's all because of the dog. She wakes me around 6am for outside and food, so has succeeded in turning a night-person into a semi-morning-person (I'll revert when she leaves). And the mornings ARE special!

Our main road that we usually do our walk on, (by accident I'm certain), seems to connect the sunrise and moonset at this time of year as if they were dots on a paper. Straight line. Look one way and at the end of the road is the rising sun, look the other, the setting moon. It actually makes driving east in the morning hard to see, and driving west in the evening (sunset), hard to see. Those of us on foot MUST be aware that drivers cannot see us at those times of the day and must be extra careful crossing.

Anyway, take a brisk fall morning, crystal clear skies, a full moon at about 30° above the horizon...we usually start our walk heading east then turn back toward home around 6:20am EST after she's finished and there it is! Magic! The beauty of Mother Nature at her best! One of the small blessings, simple pleasures that makes getting up at un-Godly hours of the day worth every minute — the earlier, the better!

Enjoy!

2009-11-01T07:47:00.002-05:00

Ah! November is here! Already?
Where does time go?
Why does it go?
And why so fast?...

So much to catch up on here, ain't even gonna try.
Let's leave it at:
I'm doing ok, I guess
things could be better, but they are ok too, I guess
brain farts live on...

Getting old sucks, but MS makes it worse -- so, just know that whatever your problem(s) may be, there is always someone else out there with worse situations than yours...

Will have to remember that, remind myself of it,
Enjoy!

P.S. Must Concentrate! NO Distractions!

2009-08-21T09:50:00.002-04:00

my husband suggested "keep a journal" so here i am, once again.

will try to keep each entry short, more just to get down on paper how i'm feeling that day. easier to see if there's a pattern to all this.

today is a pretty good day: changed insulin pump set/site; showered (yippeee!); lots of all-over muscle pains this morning, but nothing intolerable.

the last several days have been bad days--bad attitude, easily irritated, fragile. didn't get much done at all and 'zoned' (foggy) a lot.

TODAY's RATING: about 3.5 (on a scale of 0=bad, 5=ok 10=excellent).

2008-10-20T16:14:00.002-04:00

Ahhh! The end is near! The end of me and my relationship with Rebif! Tonight was supposed to be a shot night, but I shall do no more! Why? You ask? Because the sores in my mouth are starting to come back--at this 4.4mcg dose every 3 days and it's still causing side effects that are intolerable! So, no more!

I've been having a tough time lately, but it will all be better! I received a dozen roses this afternoon, as a pick-me-up and boy it sure did! Picked me up out of the dumps in no time!

Dog has been ill, took her to the vet last Saturday. Skin infection with possible urinary side effects from that. The vet gave her an antibiotic shot for her skin and that should help out a bit with the urine. Had to bathe her in this prescription shampoo and last night, for the very first time in her life, she actually jumped INTO the tub! I guess she knew!

Better get started on the rest of today. Just wanted to log a couple of items...

Enjoy!

2008-10-13T07:36:00.002-04:00

Hmmm. It's hard to describe pain. It can be intense, it can be mild. It can be aching and it can be shooting. Sporadic, constant. And the list of adjectives goes on.

Over the last couple of days, my pains have been a mix of all of the above and more, depending on which part of the body we are talking about. Head is both steady and shooting, mostly on the right side. Come to think of it, it's been a very long time since I've had a migraine. Now, I'm not talking about migraine, let's call it MS kind. Legs have been off and on achy with muscle spasms mixed in from the bone to the skin, toes to hips. Arms, that's the sad part. My hands are having muscle spasms in-between the fingers and thumb. Makes it kinda hard to do stuff, especially since it has started in my right hand too. All that said, I've been alternating acetaminophen and ibuprofen every other day. Those seem to help, for awhile, then it's more pills, ick!

Yes, walking has become a small challenge. Must concentrate, no distractions. Cannot look up to see the birds or clouds without becoming a bit dizzy. Must look out, not up. And typing is getting harder. Must concentrate, no distractions. And to think that this IS all in my head! My mother was right! I'm making all this up! Sadly, those three sentences seem to sum-up my entire childhood, but the reality of it is that yes it is what's going on in my head, but it's not something that I'm consciously doing, contrary to what my mother was meaning. Haha. Laugh, this is becoming a joke!

Tomorrow night is Rebif night. Now all I need is to muster up some patience to get through these next couple of months to see if the 3-day-shot schedule will help me. I want to get better, I really do, but the sadness creeps in when I realize that there is no such thing as better for MS patients, only coping and dealing with it skills to make us "feel" better or to help us get through a day. Each day, one at a time. Maybe that's why I loved that film, "What About Bob?" That concept of "baby steps" struck a nerve way back when, but now I must adopt it as a reality. Baby steps has to be the way to go for me, from here on out....

Must concentrate, no distractions.
Baby steps.

Enjoy!

Obama/Biden '08

2008-10-07T07:04:00.003-04:00

Good morning!
No headache, can feel pain in toes again, going to go without ibuprofen, acetaminophen, or aspirin as long as possible today, so all must be well with the world. Tomorrow night is shot-night.

Not much planned for today but must remember the debate tonight. Last one, I fell asleep about 15 minutes in. Yes, to me, it was that boring and I was that tired.

Yesterday was such a bad start to any day. I've been so concentrated on the MS and Rebif that I seem to have forgotten about insulin and diabetes. Did a blood sugar test before I ate breakfast and it was well into the 400s. That alone explains why I felt so very bad, looked about as ragged too. Took several hours to slowly get the sugars down to the normal range, but started feeling better shortly after bolus to cover the high sugar. Ahhh, memory loss, mind-function loss, it all is so much fun! Anyway, I'm good and ok this morning, 109 reading, which for me is excellent!

Onward to the day and Piñata! Enjoy!

2008-10-06T08:23:00.003-04:00

Uhhhh, mornings suck!
I feel crappy beyond crappy this morning. Don't know why my chest feels like there's a brick sitting on it, maybe it's more a chest thing from the leaves turning and starting to fall down. As I cough up stuff, it seems to get better.

The headache is finally gone! Crappy can't be that bad!
Last night, I changed my mind again--(hey! I AM woman! I'm allowed!)--and started back on the Rebif. Maybe that shot had a lot to do with the headache not being here. Low dose, but this time shots no closer than 3 days apart. Hopefully, with a longer span of time, the side effects will hold off longer and better. If not, I'll just stop it for a couple weeks and try again.... Seems that there is too much good, for me, coming from the starting shots and I need all the good I can get.

Lots to do today. Maybe. Kinda. Sort of. Oh, the more I think about it the less I really do have to do today. :) :) :)

And I know that this might sound really weird to some, but to me it's a normal happening, so I think I'll just share it and deal with any strange responses I get. You see, I saw my sister in a dream right before the dog started waking me up this morning. She was clear-as-day, knocking on the door. I opened it, immediately realizing this wasn't good news. She said that mom had foam around her heart and it wouldn't be long. I wanted a hug, at that time, so badly, but she wouldn't hug me back. I closed the door turned around and there was a friend standing behind me. Then the dog started pawing at me. Strange? Yes. You see, my sister died in 2000, from natural causes; I saw her a couple times, in dreams shortly after that. But, I haven't seen her since, not even in dreams, and not as clear as last night. I see my aunt every so often, but not my sister. Now I'm pretty sure she is here to take mom home. :(
P.S. I do believe in spirits, ghosts, angels--especially the guardian types. I've always been a "spiritual" person but it's only now that I'm fully understanding the realities of the spiritual world, and that my dreams (prescience) always were true and always DID mean something.

Enjoy!

2008-10-03T06:10:00.002-04:00

Arrgggh! This headache just won't go away! Every morning it's there, every morning it seems to get better when I get up out of bed, but comes rushing back after sitting up for a bit. Grrrrrr! Will try ibuprofen this morning, although the acetaminophen did work somewhat yesterday. Maybe switching every other day....

It's cool, almost cold this morning. Beautifully clear. Orion is easy to see if I just look up a bit as I walk out my front door. No sign of the moon in the morning sky yet. The New Moon was this past Monday, so only a sliver will show; it probably set before we got out this morning. Dog likes this cool weather too. She got down to business fairly quickly, but barked from a fear standpoint at a "road work ahead" big orange sign about a block down the street. I guess she's not quite as blind as I thought.

I just hope this headache eases soon!

Enjoy?

2008-10-02T05:57:00.003-04:00

You know, there are some things that I really want to do and some things that I don't. One of the things that I don't want to do is live long enough to become incapacitated to a point that I cannot do much by myself or for myself.

Awoke, again, with that headache. The one that goes from the base of my nose to the top of my neck, all along the bony part at the base of the skill, ballooning over my ear up to the top of my head. Is this a continuation of the one started last week? I don't know. I'll just have to wait and see.

No Rebif for a couple days now. I'm guessing that the MS is continuing along its destructive path with nothing really stopping it. I am, always have been, strong-willed, but aparently will is not enough to stop MS from doing damage. That has to be the worst part, most frustrating part, not being able to have any control over this.

Ah, am thinking that today is going to be better than yesterday. I'm hoping so. Lest I sit down and have a good cry.

Enjoy?

2008-10-01T18:40:00.004-04:00

Happy October! NOT!

Tough day today. Cloudy and off and on rain all day. Plus, I felt pretty bad throughout. Had to change my set today because the reservoir was getting a bit low. Got that done, but it took just about all the gumption I had in me just to walk up the stairs. Now, after dinner, am heading up way early to get into bed and get warm. You see, besides being cloudy and rainy, it seems that fall has settled in now for a long time to come. Soon enough the leaves will fall off the trees. The tree guys called today too; they are coming tomorrow to trim out some dead wood from the sweet gum in the back and thin out the pin oak in the front. Hopefully this trimming, which will cost nearly 1 arm, 1 leg, and my first born male child, will help the health of both of these trees...hopefully. Only time will tell.

And nope, no playing Viva Piñata! today either. Just didn't feel like it. :(

G'nite and enjoy!

2008-09-30T07:39:00.004-04:00

After giving it another full month and now suffering from some of the side effects of taking Rebif, I will take it no more. Yesterday, I bit my lip so badly that it bled for a couple of hours, off and on. This morning I noticed more sores in my mouth than ever and over the last week have had a harder time swallowing. With all those symptoms plus several others not mentioned here, I'm done. Will now toss it so that I won't be tempted again. Another try will only, almost certainly, put me back into side-effect-hell and I really don't want to go there again.

The only good thing that has come out of this is: I tried. I know I tried, can be proud that I tried, it's just the fact that the body wasn't cooperating.

Enjoy!

2008-09-27T08:32:00.004-04:00

At last! Oatmeal day!
I allow myself to have oatmeal for breakfast on Saturday, so today is a treat-day for me. Sadly, though, after two days off from waking with a headache, it returned this morning. This time I took a naproxin-kind of pain killer and it seems to be working pretty well, so far, maybe. All-in-all I'm just so tired of taking so many pills!

Talk about what I believe is the bestest video game ever! First, I have to tell you that I've been addicted to Viva Piñata! for almost two years. But now, I've been playing the XBox360 game, Viva Piñata: Trouble in Paradise as much as possible, whenever I have a free moment! It was released in the U.S. on September 2, but I didn't rush out and buy it myself. No-o-o-o-o-o-o! I had to wait for it! Even longer, for what seemed like forever! You see, my husband told me Labor Day weekend what he had done...(ooooooh what now? I ask)...then smile and almost cry tears of joy when he told me about what resulted in about the neatest gift I've ever received! Ever!

He had contacted a friend who he thought would know how to contact Rare® and ask them if they would sign a copy of the game to send to me. His friend did have contacts and the process was started. As with all game releases and release dates and international mails and international laws, sometimes even the developer of the game doesn't receive its copies until the release date, especially when it's a British company teamed with Microsoft® as the publisher. On September 10th, I did receive the package, from Britain, that included a signed copy of Piñata 2 with many of the developers' signatures all over the cover! Sweet! They included a kind note along with several of the Piñata Vision cards. Needless to say, Christmas came early for me this year! September 10 is now "my" holiday!

Even today, I still smile every time I think about this! Good therapy, if you ask me.

And talk about a well-designed computer game! So much to do, so much to explore! This is going to keep me busy for years to come! You see? I started playing the first version back on December 26, 2006, well, actually a couple days earlier on my husband's XBox360. That in and of itself is a long story so let's just say that for Christmas 2006 I got my own XBox360 so I could play that game and he would have access to his own XBox360. And even now, I still go back to visit VP1 to "clean-up" some of my gardens or send a piñata out to a friend...yes, addicted. And what do they say about obsessive/compulsive behavior? Just replace one with another...oh darn!

And, for a therapeutic mind/brain/thinking challenge there's nothing better than video games. So many sides of the brain are stimulated; hopefully this gaming stuff will keep my brain's nerves behaving!

Enjoy!

2008-09-22T11:10:00.006-04:00

Relapse.
Can you say, "relapse"? I sure can and am not happy about it.
Awoke this morning with a splitting headache, right side, centered, oh about where the lesion showed up on my MRI last year, going forward to the base of my nose, along the bony parts, backward along the base of my skull, down to the base of my neck. Left leg is painful, left arm is painful, but that pneumonia-like pain in the left side of my chest is gone.
Two acetaminophen and I'm feeling a bit better--the headache seems to be gone, but walking and typing are hard-to-do. Not really painful, just hard to control, hard to do.
Hence, relapse.
I will continue the Rebif shots, every other day, very low dose, though. At least this time, this relapse, I can feel the changes. Last time it was just happening where all of a sudden it seemed that things were happening but I couldn't put labels on them. Now, that's possible to do. And am feeling a bit more in control (as if there was any form or semblance of control in MS). Maybe it's just that I feel, I seem more aware of what is going on now...the Rebif is helping!

--sarcasm on-- Did I mention that Viva Piñata: Trouble In Paradise (XBox360) is a STUPID game!!! Oh, I guess I haven't, but it is!!!!!! I hate it!!! Am NEVER going to play it again, ever! --sarcasm off-- (And, please note, earlier post about how I should never ever ever again say never ever ever!)

Actually, it has to be one of the best games produced--better than the first! From my perspective, being so very steeped in the first version and knowing all those moves by rote, it makes this new version quite awesome, but STUPID!!! Very frustrating sometimes, yet very good for one whose brain needs all forms of jogging and exercise and challenges it can get! Gaining levels seems to be easier in this one and accumulating chocolate coins is a cinch! Still, Rare has included so many creative possibilities for designing and maintaining gardens, so much fun stuff to do, very cute interactions between their in-game helpers and the piñata, that I am beginning to believe that I'm already hooked on this one worse than the first! In hindsight, though, I started playing the first version on December 26, 2006 on my very own XBox360 after having usurped my husband's XBox360 to play Viva Piñata for several days prior to his breaking down to buy me my own :). I was still playing that version up until last week when my very own, signed copy of TiP arrived from Britain! You see, my husband got his friend to ask his friend, to ask his friend, and so on, etc., if it was possible to get the staff of Rare to send me a copy of the new VP:TiP signed by most of their staff associated with the game. They apparently said "sure thing!" and sent me my very own signed copy including some of the Piñata Vision cards, along with a note wishing me well! The evening it arrived, with husband looking over my shoulder, I loaded up the DVD and have been playing it since.......
Thank you, sweetie, sweetie's friend, Rare, and all involved with making this happen!

And now we return to our regularly scheduled program....
Enjoy!

2008-09-18T18:09:00.004-04:00

Wow, again.

With all the feeling in my arm, leg, chest on my left side that has returned since restarting the Rebif shots (very low dose), I've had a couple of pretty bad days. This pain in my chest and back had to have been the beginnings of pneumonia of some sort or another. Had to be! I've coughed for about 3 full days now, taken guaifenesin as often as the directions allow, and feel a lot better overall now. Still need the ibuprofen to ease some of the pains, but that seems like a piece of cake anymore. It's nice to know where the pains are although there is a lot to be said for being numb, sometimes. It's also nice to have a sense of balance while standing again, although at times there are pains in my leg that are bothersome--but at least I can feel that leg there and it functions a lot better now too!

Will continue this every-other-evening schedule of shots for as long as the severe side effects from the Rebif stay at bay. Interferon DOES "interfere" and I'm glad that it does!

Today, I finally started playing the XBox360 game, "Viva Piñata! 2: Trouble in Paradise." Is a lot of good fun building gardens and attracting piñata, designing layouts, building landscapes, fighting pests (Ruffians, in this case). I played the first version for almost 2 full years and still love that game, love the concept and love the idea that it's easy to fix troubles if they crop up! Just gives me the sense of control over something again!

Enjoy!

2008-09-15T12:45:00.003-04:00

wow! Summer went fast!

Too fast, actually. Lots has happened, lots has changed. Hopefully these changes are for the better this time.

Had a rough start to the morning/today. Getting a bit better now. Eating lunch--toasted cheese sandwich (high fructose corn syrup-free bread) and a stalk of celery as a side dish. Sugar reading at 100 mg/dl, which is excellent!!! But, have to be a bit wary because another HYPO may be on its way!

Let's see, last post here was May 9, shortly after I swore off Rebif for forever, never again, right? I have to stop doing that! Must ban "never" and "never ever ever!" from my vocabulary! Starting now, right? Anyway, it seems that every time I say that, promise myself to abide by that statement, something changes and I tend to change my mind about the whole situation again. I guess all this proves that I truly am just a normal woman. Bah!

The first major thing that happened to me since May 9 was a flare-up of gout! Had gone to a baseball game (was a lot of fun!), had a couple of beers (which hadn't done in a very long time), and by the time I got home my big toe was red and throbbing and very painful! Looked all that up on the internet (my main source of any form of information) and it seems that making that pain go away would be very simple!!! Yeah, right!!!? Changing diet is a good way to rid oneself of the risks of flare-ups, but it seems that for years my diet has been everything that the "gout diets" say to stay away from. Hmmmmm...oatmeal every morning for just nigh on 20 years, red meat just about every day, creamer (very high in high fructose corn syrup) every cup of coffee, breads that ALL contain hfcs, and the list goes on, but the worst part of it? Having MS I'm supposed to be vegetarian (no way in hell, right?) so I chose to have seafood instead of meats--tuna was the basis, with crab soup, crab cakes, crab dip, crab-anything (I live in Maryland), shrimp any form, salmon all types/forms, including lox and bagels!!! Like I said, change diet = easiest way to get rid of gout!!! RIIIIIIGGGGGHHHHHTTTT!!!

So I did and wonder of all wonders! The knuckle of that big toe that used to be red and painful is getting better too! I've apparently had gout in that main knuckle for years!!! What I thought was just "arthritis" forming from a toe that tried to be a toe-dancer many many years ago (but failed miserably at it), was probably gout! Today, after almost 1.5 months of watching what I eat very carefully, I can actually move that knuckle a little! Amazing, actually, seeing that just those several weeks ago, it was so painful that putting a shoe on was almost impossible and the knuckle, itself, was "frozen." Couldn't bend it at all, but now, there's movement!!!? Ooohhh, k!

Onward!

Next biggest thing was a reverse-decision about the Rebif. Seems that me, myself, and I was getting farther down that MS hill that I think anyone, including me, wanted me to be. By the end of August, having conquered the gout thingy, I had noticed that the other leg was more and more numb all over, not just in the lower parts--ankle, foot, toes. The arm too was becoming more and more like I couldn't even feel it being there, although I knew it was. Heck! I saw it! It is there! Never went anywhere! But I had noticed that I couldn't feel pretty much all of it. Not tingly either, just plain numb. So, did a lot of soul-searching, especially because I'd be going back, once again, on a promise to me, myself, and I. The Rebif that I hadn't used up until last May was still in the fridge, didn't have the mind to throw it out, yet...so it's still there. Just sitting. Keeping cold, taking up refrigerator space. It was that one time that my husband MOVED it!!!! to clear room for pizza boxes leftover after a LAN party, that I started thinking about, ever so quietly (i.e., not say anything to anyone about thinking about this), trying the Rebif again to see if it might help. That was in the beginning of August.

Are we caught up yet?

Um, no.

Still thinking about restarting shots, Michelle Obama, in her speech at the Democratic Convention, is what sealed this deal for me. She mentioned that her father had died from complications of MS. Complications? What? This disease has complications? Bah! So, back to the internet and research and lo and behold, complications. You know, the stuff I skimmed over when I was first diagnosed with this disease. You know, the stuff that denial misses. Oh my, pneumonia, can't walk, can't use hands--can't type!!! oh no! Like I said, that speech of hers hit a nerve in me, and denial became that river in Egypt once again.

August came and went. Kid went back to school. Labor Day arrives, but it was the Saturday of that weekend that I actually discussed the idea of "trying" the Rebif again with my husband. I privately had decided to restart it at a very low dose, to see if 1) the dizzyness would come back, and 2) if it would somehow help. So, amazing to me, he too was worried about how far down that hill I had gotten and welcomed the idea! You see, if anything were to "go wrong" he'd have to take care of me and it's only fair that he know about it beforehand, just in case. We actually agreed that I'd start out at 4.4mcg's on the Monday, Wednesday, Friday routine for the week following Labor Day and see.... Well, we saw...

That Tuesday morning, after my first shot, was an Oh, My, God!!! moment! Two things changed overnight: 1) I was much more stable on my feet while standing; and 2) pain! yes, PAIN was back in my leg and arm! It was that morning that I actually realized how far along and how bad I was doing, although I didn't "feel" that bad..... You see? When you're numb, you don't feel...anything!

It has now been two full weeks that I've been back on the Rebif, but at a very low dose and just going to do it every other night. I know this is contrary to the "standard" dosing of that stuff, but by the beginning of the second week of shots, after a two-day layoff from it, I was feeling noticeably worse, so I suggested to my husband that I just start taking shots every other night. He agreed. We both did the math regarding half-life and time; figured that the most I'd have in my system at any one time would be less that 28mcg, which is tolerable, semi-, if I were to do it in one shot. So, last night was a shot, tonight is a skip day, tomorrow is a shot day...and so on. Next Monday, I'll be back to MWF but will continue STTS onward.

Scary. The worst pain that started again, middle of last week, that I didn't know I had before the shots started, was this pain in my chest, centered in the middle of my back. Not a good sign at all! Probably was the start of pneumonia....

So, I started treating this as if it were a bad cold, and the guaifenesin in this cough medicine is helping tons and tons! I've been coughing up stuff for several days now, and that pain in my back it subsiding, big time. And now I have something to actually thank the Rebif for.

Now, I think, we're caught up. At least on the big things.

2008-05-09T08:36:00.002-04:00

Residual effects. Or was it a true relapse? Only an MRI will tell....
But until I actually go and get that test done (which will be a long time if I have any say in the matter), I'm going on the idea that these dizzy spells, every now and again, are residual effects of Rebif. Sadly, my metabolism isn't coping very well at all with that drug and the aftermath of an overdose. Last night was a fairly serious dizzy spell--during our major thunderstorm--when I had to get up to go to the bathroom. Almost fell over twice, but caught myself quick enough to get fairly steady and go on. This morning, however, a serious dizzy spell lasting about 15 minutes. Had to sit on the side of the bed for a bit, then take very slow baby-steps toward the bathroom, and nearly fell over while sitting on the potty. Something is definitely going on in my left side, or is it all in my head?

Guardian angels. Yes, I believe in them. I have a very dear friend who happens to be and have been my guardian angel for many many years now. During high school and college, he would rescue me by just plain showing up and being there. Showing up at the most inopportune times too! Like when I'm just about ready to give up on life completely or when I'm so very emotionally distraught over some minor matter that life bashes me in the face with. Well, it happened again. Last week. An email, er, text message, on my birthday, wishing me a happy birthday. That is all. That's all it takes. That one spirit that is so very connected that without any stimulus from me, just announces that he's still there, still cares. Asks how I'm doing, I say ok, how are you? Then we both go our own separate ways until a moment in life that connects us once again. Yep, guardian angels exist. Most times they are right under our noses.

Today, my son returns home from college for the summer. I find I cannot say "my kid" anymore because he truly is a young man now. Very "all growed up" and doing well. Am excited to see him and told the dog that he's coming home (she knows his name) and she says it all in her reaction--wagging tail that makes her back legs a bit unstable. Yep, she's excited too!

Enjoy!

2008-05-06T16:28:00.004-04:00

Well, another day and a bit better!
Head is finally feeling almost clear, so given the half-life calculations earlier, I don't process drugs at a "normal" "suggested" "laboratory test" guideline amount of time. If tomorrow I feel as much better as I did today compared to yesterday, I'll consider myself recovered!
THAT requires a big YEAAAAA!

Enjoy!

2008-05-05T12:12:00.003-04:00

Ah ha! I made it to another day!
A big Yeeeaaaaa! is in order? Am thinking not. Not yet.
I don't think I've ever had a hangover this bad, if you can call this period of time since last Thursday a hangover. Yeah! Good word for it for sure, so like I stated before, I've never had a hangover this bad...ever! Not even the 9 shots of tequila in 20 minutes...nooooo! That headache and all over feeling lousy lasted only about 3 days tops. Not even the 3 or 4 days after falling down the steps, passed out, turning blue and convulsing because of an insulin-overdose...nooooo! Those two times are about the worst I've ever felt before now. Yep! Welcome to my worst hangover ever!

I'm pretty sure that the Rebif is almost fully out of my system, although, something is telling me it's still at a pretty good-sized level--enough to cause continued feelings, although slight, of vertigo and a tummy that wants to heave or is constantly upset. I can, however, turn over in bed without feeling that the bed is falling out from under me, can sit pretty well on the potty now when I need to be there, can balance pretty well while standing or walking. I heard somewhere that walking is a nice thing to learn to do, you know, way back when, when I was oh around 1 or 2 years old...yeah, nice thing to learn to do! Plus, was able to get several chores done already this morning! Good one! --pats self gently on the back--

Now, on to the rest of today. Driving, lolololololololol (that means tons and tons of continuous laughing out loud for those out of the know)! I've needed to go to the grocery store for almost a week and getting there has been a slight problem. Nevermind the fact that I cannot walk long distances, no, forget that one. Nevermind the fact that I cannot remember what to get while I'm there (yes, I do make lists, but what if I forget to take it with me?), no, discount that too. What the problem is is I'm scared to death to even get behind the wheel!

I was taught, long ago, that a motor vehicle (although some are sweet to look at and/or own) is still a weapon and a very powerful one too. Not that I would do anything, on purpose, to cause anyone else harm, or myself harm for that matter, nah, not intentionally, but I'm scared to death that one of these recent "spells" might happen in the middle of going 55mph with cars/trucks on both sides of me! Or stopped at a stop light, when I lose control of my legs or fall over like I did a couple days ago on the potty........yeah, scared to drive! So, here I sit.

Will try to work in a nap later this afternoon. Sleeping might help some of the healing that needs to happen.

Oh, and I'm going to start back on the baby-aspirin-a-day regimen because I stopped taking those when I tried these MS drugs. I had actually started that routine way back when my father's doctor said that my taking 1 per day wouldn't hurt. That was almost 10 years ago. Mini-strokes run in the family too; my father was demented by them. His CT Scan was pretty much all white, very little gray on the film. My MRI, however, shows only that one lesion, a lot less white and still a good amount of gray. A baby aspirin might help thwart any other white showing up in the form of mini-strokes. Lord only knows I don't need that piled on to my pile too!

A Centrum Silver and a baby aspirin--yeah, things are looking up! Getting back to normal!

Enjoy!

2008-05-04T07:18:00.003-04:00

And to think that last Tuesday was bad! Geezh! That was nothing, a cake walk, a birthday party compared to last Thursday and Friday and yesterday! Even now, I'm still semi-dizzy, semi-spinning in my seat and having a bit of a tough time sitting up, walking, bending over, or sitting on the potty without falling over.

You see? I overdosed on Rebif.

Not on purpose--hell, that is not a way that anyone would want to go out by--but through what I'm thinking has to do a lot with the half-life of the drug mixed with my body's metabolism and the way it acts and reacts to various drugs (Rx, OTC, or other). That second 44mcg (the "normal" dose) did me in, starting with Wednesday night. Thursday morning I could not get out of bed at all, could not move my head up, down, side-to-side, nothing. Could not roll over in bed even because any movement at all caused serious spinning sensations in my brain, eyes, head, body. Doctor said it was mild vertigo--BAH!!! I was throwing up at the slightest movement. And talk about trying to go to the bathroom! That, my friends, was a joke! Just trying to walk to the potty took about 10 minutes (normally, about 10 seconds, er, maybe 15 seconds on a bad day), then when I sat down? Fell over sideways, head against the wall (thank goodness the potty is in an alcove where I was able to lean against one of the walls), but trying to throw up from that position is hard to do. Now maybe you get the picture, but it gets to be more fun!

One cannot throw up from a sideways sitting position, nope, not possible. So, my husband held on to my shoulders to keep me from falling forward off the potty, while I was peeing AND throwing up. Yeah! Mild-vertigo, MY FOOT!

He almost had to carry me back to bed that morning, but I made it. He called the poison control people, then the doctor after his office opened. Neither said anything about an "overdose" probably because one had never been documented!!! Oh goodie! But the poison control people did tell us that the half-life of the Rebif is 17 hours. Oh goodie, goodie, goodie!

Ok, on to my personal metabolism. Not that it's more interesting, but just typing this about that day (and the next, although a bit better) is making my head spin and that is not good to have happening this morning. I'm still semi-dizzy just sitting up in my chair here.

My metabolism, throughout my life, has been one that puzzles just about everyone I talk to. I never was a drug addict, never smoked (not even pot), was a really "cheap drunk" (still am), and didn't need to take as much aspirin or Tylenol to get rid of a headache (normal kind, not migraine ones--those are another story). But!!! I didn't ever really realize that until a student endocrinologist, during one of my regular visits to my regular endocrinologist/teacher, pulled out her calculator and did the math as to how much insulin I "should" be getting given my height, weight, and whatever factors they plug in to get a general result. She compared that number to what I had programmed into my pump and she said I was giving myself way too little insulin! Talk about shocking information!

She said that I would have to increase my insulin basal by over 10 units throughout the day because I wasn't getting enough insulin and that was causing my sugars spiking!?!?!? I guess the look I gave her was one of those "don't you dare even be in the same room with me--are you kidding?" kind. She cowered, insisted that her data was correct, I looked at her then and said, "yeah, I'll increase to those levels. Are you going to pay for my funeral?" It was then that she ran for the doctor.

You see? Compared to her "normal" numbers, my body needs only about one-half to two-thirds of that amount. Doctor concurred and it looked as if a light went on in his head too! He apologized for the student and for his own insistence on increasing the insulin and that day we actually lowered the amounts and from that day forward, at the lower doses, I'm doing a lot better on the insulin pump. My body doesn't need full doses of anything. It IS that sensitive--to any drug!

Well, knowing this for well over two years now, I've been able to adjust accordingly. That was until last September when I mentioned this to my neurologist. He stressed that the data for these MS drugs are only valid for the full-dose studies, and if I didn't do these full doses, I wasn't going to get the full effects/benefits. Ok, seems reasonable.

But the strangest thing happened, that now, in hindsight, seems obvious (but wasn't at the time) as I was titrating up on the first round of Rebif, from 4.4mcg to 8.8mcg, that first shot of 8.8 caused a very mild reaction (dizzy, sick feeling) so I immediately stopped doing that at that time. Was off the Rebif for almost 2 months before trying the Copaxone. Full-dose first on, and from my logs here (when I first started posting) you can see that it only took about a week for that drug to do its damage to me! Anyway, back to a couple days ago....

So I figure, the way I was feeling last Tuesday, after that first shot of 44mcg, was probably because my metabolism ISN'T the 17 hour half-life of that drug, I'm guessing about 34 hours is a better estimate for me. So even that first full-dose was the beginning of a major overdose. Am guessing that there was about 10mcg still left in my system after last Friday's 22mcg dose at the time of my Monday's 44mcg shot. Tuesday, I did have a couple of very mild spinning spells, but nothing that didn't clear immediately, but that whole day was a horrible feeling day. Back to figuring, that makes about 44+10=54mcg in my system on Monday night/Tuesday morning. By Wednesday morning, was feeing a bit better, spent only about 1/2 of the day in bed on Wednesday and by shot time was doing ok. By 7:45p that evening, given the numbers above, I still had about 30mcg in my system. Then, I did a shot of 44mcg (regular dose) and voila!!!

Yeah, Rebif overdose.

Even on the Rebif pages they say do not do shots that close together. I wonder why they'd say something stupid like that? Plus, they have no idea what an overdose of Rebif looks like? Oh well. I did not go to the hospital, probably should have. I survived, barely. Am doing better now. So, onward!!! Needless to say, THERE WILL BE NO MORE MS DRUGS FOR ME!!! EVER!

I'll say it again. Never will I do, experiment, try, consider, allow any MS drugs to be put into my system!!! I will not try the "new" oral ones, no more sub-q shots, never an IM or IV one. None!

This chick is going to let nature takes its course. And will start to drink heavily (maybe) so at least I will have an easily understood reason for falling down and going boom!

And one more time, just to be sure! No more MS drugs, of any kind! Never, ever!

Enjoy.

2008-04-29T17:01:00.003-04:00

Wow! 'Tis fun winning a trivia contest! Thanks Lisa!

Today, though, was one of the worst days I've had since I can't remember when. Oh! Wait! Now I remember, since the day AFTER sleeping at the potty because I didn't have, wasn't even on, migraine medicines pre-1980. Yeah, been that long. You see, last night was my first 44mcg Rebif shot ever. The titration went semi-well, but I sure as hell didn't expect this kind of reaction. Last weekend started the skin reactions to those first 22mcg shots--went to the doctor, he checked them out, said those were normal and weren't "bad" enough to warrant any action (like stopping the shots). This weekend went fine, up until last night. Like I used to say, during a migraine headache, "my hair hurts!" That meant that my skin was so very sensitive to touch that even brushing my hair caused excruciation pain! Well, this morning, my hair hurt once again, but this time all over, not just on my head. All muscles, all skin surfaces, everything hurt! And this is supposed to help? Maybe?

Almost threw up breakfast, but after my first cup of coffee, my tummy seemed to settle down. Was able to sit up in my desk chair and play some Viva Piñata! on my XBox360 for a good part of the day. Walking the dog was a major chore, but was able to get it done! A major accomplishment for today, so am feeling pretty good about the fight I'm going to have to go through to get to the point of being used to this and not having such terrible side effects.

No Rebif shot today.

Insulin pump supplies showed up, the 3-month shipment. They also sent a new blood glucose meter that will talk via infrared to my pump after I do a blood test. I don't trust this technology much, yet, but it's the first step toward full-automation (external pancreas) of the sensor/pump relationship. The sensors are available (in Europe), but my endocrinologist doesn't like that technology at all yet--it's way too inaccurate. So, yes, this old dog is going to learn a new trick. I just wish I felt more like testing blood more often. I tend to procrastinate too much when I'm feeling so bad all over.

Now, for the good news! There isn't much!?!?!? I'm alive, my kid is alive, my dog is alive (feeling better herself), and my husband is alive (getting his copy of GTA IV this evening, so I'll become, yet again, an XBox-widow!). Yep, all is well and right with the world.

Enjoy!

2008-04-23T08:01:00.002-04:00

Nothing two Tylenol can't fix! Seems that I'm taking those more often than not anymore. But before the Rebif, it was only one, not two. Lots to do today. Chores are seeming more and more rewarding because I'm able to see the actual accomplishments.

Friends are coming in for the weekend for a short visit. We will take them to the Air and Space Museum (gee, I hope I'm feeling well enough to go), show them around the monuments, then probably just come home to play xBox 360 games! Sadly, we won't be able to take them to an ice hockey game because our Washington Capitals lost last night in a very well played first-round playoff series . But!!! There's always next year and that should prove to be fun to watch!

Ah, back to chores and breakfast!

2008-04-21T17:07:00.005-04:00

And today, is/has been a semi-good day, after two bad days, back-to-back. Went to neurologist this morning because over the weekend I noticed that I have 3 site reactions from the Rebif shots last week. He said those were mild reactions and quite normal for many of the Rebif patients, so it's something I'm just going to have to get used to. But, you'd think that after 22 years of insulin shots these would be pieces of cake? But noooooo! Apparently this drug is causing skin reactions that I never had with insulin. Oh well.

<--JoJo (the bestest ever!)

Tonight, though, I'm going to stay up as late as possible so that my dog can sleep in her crate. It seems she has some sort of soft tissue injury in her back that has been causing her pain; I was misinterpreting it as IBD. Right now, she's sleeping quietly in her crate, but after years of having full run of the house, upstairs and all, keeping her semi-quiet is a chore! And this Rimadyl drug isn't agreeing with her well at all, but it seems to dampen the pain. She's so very independent, so very loving, so very precious. With a little extra work from me, she'll get the rest she needs, and hopefully the soft tissue will heal.

Hopefully, all told, tomorrow will be a good day....

2008-04-03T06:25:00.002-04:00

Ah ha! So this is why I stopped the Rebif therapy last December! This headache is horrible! But nothing, I'm hoping, that a couple aspirin can't fix. But this time, I'm going to try to tough it out. I figure that I need to do something pro-active to stave off relapses, new lesions, new numbness, and the slowly progressing inability to move.

Onward....

2008-04-01T17:35:00.003-04:00

Well, I finally bit the bullet and started the Rebif therapy for my MS, again, last night. The first round of it proved to be full of side-effects so I stopped it for almost 3 months. Today is proving to be a good start, so far. I'm using the titration pack again, 8.8mcg for 6 shots over 2 weeks' time, then 22mcg for 6 shots over 2 weeks' time. The full dose (44mcg) comes after those 4 weeks of therapy, and hopefully this time it will be tolerable or side-effect free. You see, over these last 3 months, the pain grew to be almost comparable to that which I was experiencing during the first round. I figured that going through hell without any drugs was bad enough, but going through hell with the hope that the drugs might help is much better.

And on the Rock Band front: welp, I tried the guitar parts on a couple of the songs, but didn't do all that well--that game is hard! I'm a singer by trade, career, life-time and am finding out that these rock songs are a lot more complex than I ever gave these groups/song writers/performers credit for! Still, tons of fun and hopefully it too will be a small brain exercise!

Most of the time, anymore, I play my Nintendo DS and Brain Age or Brain Age 2. The Sudoku puzzles that they've included are addicting! I've gotten some of those done with rocket speed, but those few puzzles are in the minority not the majority. I have a lot of going back and challenging myself there.

Anyway, it's almost dinner time here. Must go tend to other things. Next shot is tomorrow night. ttyl, enjoy!

2008-03-28T09:20:00.004-04:00

Well, after long thought and some minor setbacks (mainly having more and more trouble swallowing without choking) I've decided to go back to using Rebif. I got my "new" shipment yesterday, but because of the dosing schedule (Mon Wed Fri) will start this round of immune modulation therapy this coming Monday evening/night. I did some more research into other MS drugs, especially the oral kinds that are in Stage 3 of their trials, but those are about 2 years off from being released. Am now agreeing with my doctor, I probably shouldn't wait too much longer to start some sort of long-term therapy for MS because we were quite lucky to find it early on in this disease's progress in me. The side effects from my first round of Rebif paled in comparison to the Copaxone side effects. Plus, the Rebif has shown more promise and is tending, in the studies, to heal lesions, not just prevent them from happening.

I'm not looking forward to feeling crappy for two months or so, but even a small benefit is better than none. Others have had excellent success with controlling their MS, why not me?

2008-03-08T08:45:00.004-05:00

The weekend is here! Oh glorious! NOT!

This happens to be the weekend that we set our clocks ahead an hour--ick! Changing the clocks in the fall is bad enough, but this one is the worst! Adjusting to the new time will take me about 3 full weeks. Tomorrow at this time, it'll be almost 10am, almost time for lunch, and I'm just now eating breakfast! Who in their right mind ever thought this was a good idea?

I know, I know, I could look it up, but am too lazy. Besides, it wouldn't be something that I could act on....

You see? When I turned 14, it was a Sunday, last weekend of April (we used to set clocks ahead in the spring on the last weekend in April, not the "new," even worse way). My family DID remember to set their clocks ahead, but not my friends' families. So, what was to be a birthday party gathering, turned out to be a very sad day. Everyone and their brother was late to my party, by an hour, but it broke my heart. Turned out to be a good time, but rebounding from a broken heart at the tender age of 14 left scars and a true life-long hatred toward daylight savings time!

2008-03-07T13:42:00.002-05:00

Ahhh, feel much better today! What a difference one day makes! The best thing for today is that my kid is coming home from college for spring break! He should arrive around 9pm. Aside from that not much else going on, except for having to run to the grocery store.

2008-03-06T08:17:00.004-05:00

Ah, good(?) morning!

It took the dog 40 minutes to wake me up/get me out of bed this morning. Even now, I'm still half-asleep. Stayed out way too late last night, then had to stay up to watch the final of Project Runway. My sleep patterns are all messed up now, and I'm very tired. So, today is catch-up day, lest I bring on other unwanted set-backs. Breakfast and back to bed is the plan for today!

After the let-down suffered from Tuesday night's election returns, I found some encouraging news this morning regarding the pledged delegate counts in the Democratic Party. Seems that all is not lost regarding Sen. Obama's campaign. Jonathan Alter of Newsweek had this to say about the math and how it works for this election year. Made me feel a lot better about this primary process and how it will play out. I am now more encouraged that Sen. Obama will win the nomination. That is, barring some underhanded bullshit from the Clinton campaign. By the way, I've lost ALL respect for our ex-president and even more for his wife. I could go into it deeper, but I'll save that for another day--when I'm fully awake! Enjoy!

2008-03-05T07:02:00.004-05:00

Multiple Sclerosis front -- all is well. Although my leg cramps started again last night. Am thinking, though, that it's probably more lack of calcium or potassium in my system than MS related. Must get bananas and oranges at the store today.

Politics front -- I guess this nation doesn't want change. Last night's election results are a sad testimonial to its own demise. Am thinking that after November, there won't be much left of the United States of America. But there might be a bit more to this story in the coming months. We'll just have to wait and see.

Diabetes front -- way too many hypos lately. Doctor suggested lowering the basal rates on my insulin pump a bit, so, maybe today I'll not have one? All I can say about this is, damn it! That damned Copaxone caused this! It might take several weeks to stop the sugars from bouncing up and down all over the place. I'll just have to wait and see.

Carney Syndrome front -- hmmmm. And hmmmm, again. Haven't thought much about this lately. But! Now that I've tried a couple of the MS drugs, I might have to go down this path to see if what the people in New York (who are studying this) said is true. That my MS "symptoms" might be caused by a microscopic myxoma tumor sending off all sorts of nasty chemicals. Hmmmm.

2008-03-04T08:21:00.003-05:00

This is going to be an interesting day! From the MS standpoint, I'm doing quite well, although there's a hint of imbalance while standing this morning. After breakfast, I should be a bit better, but that's going to take a bit of patience.

Am going to call my mom back now. She's home alone and is feeling a bit scared because her caregiver had to go out to do some errands this morning and would leave her alone for a longer time. This might work out well, she needed to go and will call me back again.

The Ohio, Rhode Island, Texas, and Vermont primaries are today. Yes, getting into politics now, but I'm so interested in it this year. There are outcomes that must happen--for the well-being of this country. For way too long...oh, I'll stop now.

Back to MS...today, I have no new issues such as numbness in new spots, but just the bit of imbalance while standing.

More later...
Maybe...

2008-03-03T17:05:00.001-05:00

**sigh** Just got off the phone with the doctor, regarding my amazing recovery after stopping the Copaxone. Not good. And to think that I was feeling so much better today! Oh, well. I guess the medical community has to constantly protect itself and its pharmaceutical companies. Must keep those profits coming in at all costs!

Anyway, today, I have feeling in pretty much all of that leg that was thigh-down numb just six days ago. My balance while standing up has returned, pretty much to the point it was prior to trying the Rebif a couple months ago. And am walking fairly well. That Rebif try was also a waste of time for me. Taking that drug was a joke, made me feel worse all over than before I started taking it. I'm not going to go through hell to eventually have to go through hell (with MS). That's my new motto, I'm just not going to do it.

And now, I'm feeling a bit alone now. Tossed right back to square one. Right back to that beginning of the fork in the road, yet this time there are so many paths to choose from again. My doctor said that it was up to me, my decision if I want to continue being pro-active against multiple sclerosis or not, by starting the therapy again, giving it yet another try, or not. He did ask that I keep track of my ups and downs, though. Right now, I'm going to not take any drugs and just wait and see if my situation declines quickly, or if it's going to take some time to worsen. There are so many new drugs in trials now, but every last one of them is scary to me. So, yes, I believe the 'do nothing' path is a good start.

In the meantime, I'm going to work diligently on getting my sugars back into some form of control. The Copaxone threw it way off track, spiking up and down throughout each day, and now am having hypoglycemic reactions (hypos) as a reaction, although it's been several days without the MS drug. Diabetes, insulin-dependent, sucks! But, in time, the hypos will subside.

Am now considering finding a new neurologist, although I do respect, like and trust my current one. I guess it's just that I'm a very independent person. I'm just not so sure that there is really anything out there, right now, that's going to help me. Insulin helps, yes, for almost 22 years now. But an MS drug? I have no faith in those based on my personal experience with two different kinds. And I've heard that there is only one other "kind," Tysabri, which has been in the news recently. And that news wasn't good. Seems it causes liver damage too, along the same lines as the Rebif. And being IDDM increases that risk, for me.

2008-03-02T11:22:00.000-05:00

Today is the best I've felt in a long time!

So much has been going on, I have no idea where to start. Well, sorry, I lied, I'm starting with creating this blog (which is something I've been wanting to do for a pretty long time now).

I actually have some feeling back in my left foot, after having awakened on Tuesday, January 26, 2008 with my left leg (lower thigh down) numb. Even had leg, foot, and toe cramps that I couldn't feel. You see? I started doing Copaxone shots for the MS about two weeks prior to that day, at one-third the total dose (long explanation, saved for later). Was doing quite well on it, with few side effects. Then, to have this happen, all of a sudden, without any warning! It was very hard for me to balance while standing let alone walk. So, after seeing the neurologist, reporting this set-back, having him only note the situation, I did the "normal" shot before bed that night.

February 27--something was irking me. Something didn't feel quite right. I needed an answer! Plus, my left hand was starting to feel numb too! So, I did more research into this "new-to-me" drug. Found a very interesting post, 3rd down from the top, which semi-described my situation. Mouth dropped open and I about cried. Had a long heart-to-heart discussion with my husband, showed him some of the links I was looking at, and (thank God!) he agreed with me to stop this drug immediately, just to see if this new numbness in my leg/foot was because of the shots. I could always just start taking it again if the numbness didn't go away. No shot that evening.

Well, it was the next day, February 28, that I noticed tingly semi-feeling pain in the tip of my left big toe. Oh my! Maybe there is something to this! But not going to get those hopes up too fast, too soon. Let's give it some more time....

February 29--actual feeling in the tip of my big toe! Off the stuff for two solid days at this point. But, there's more good news. The ball of my left foot was tingly and painful! Now, that kind of pain is well worth the tolerance needed to cope with all this!

Yesterday, there is feeling in the ball of my left foot along with tingly pain in those toes! Celebration is needed! I can actually walk without the limp of several days ago. Still need more time for the full feeling to come back, but this is one time that is worth waiting for! Hopefully, the longer I don't take the Copaxone, the better I'll feel.

I still have not reported all this to my doctor. Will do that tomorrow during my weekly check-in with him. Just wanted to be sure, prove that this event is a side-effect of Copaxone for me. Whether or not this is a side effect for, or might happen to another MS patient, I don't know. I'll leave that up to each patient and his or her doctor to decide. For me, I'm not going back!