sssslacker

that's like cha cha cha chia. remember those horrid things?

Really I do have a lot I need to write down. I'm on 9000 meds now b/c I have an ulcer and a sinus infection. I'm wondering if my meds are causing me stomach issues or maybe it's just my life or hell maybe it's a combo. Either way I'll be glad when all this crap goes away. I'm tired of it. Seriously.

So, lots has been going on...

only I have obviously not been blogging about it. My health is stable but the rest of my life certainly is not. Tired. That's what I am.

I posted something new today

and I don't remember it at all except that now I get to go to pt for my knee which I know won't work and I'll end up in ortho saying no to surgery.

ummm my mom is coming tomorrow. I may be blogging from prison.

it's been awhile...

I have 2 new meds from Zoe...ativan and lunesta...let's see how they work. I am sleeping better I think and I'm not as anxious at night. I think maybe I need the ativan during the day too. Really I feel like shit that I'm adding so many meds but so much is happening that I'm not dealing with the right way I have to. I'm not going to be like this forever. I'm going to fix this. I am. I really am.

Yesterday I made a knee injury worse and now am on crutches for 2 weeks. Great.

Mrs. B is here. It's weird to have a friend visit and to not want them to go home. It doesn't feel like she's been here for very long. It's cool she's here and I'll be sad when she's gone.

Can't think of what else I wanted to say so I'm gone. Bye bye jokers.

BIopsy results

so on our 10th wedding anniversary I had my thyroid biopsy. Thanks to the rad people who supported me thru that. I got my results and I am OK!! Too many words to type out. All that matters is that for now I am ok.

Today Dude is 36

Happy Birthday dude.

Lots of stuff has happened in the past month. August 7th I have a thyroid biopsy. The left side has a solid nodule the right 2 that seem to be full of fluid. We'll see.

Damnit.

DId I say though that the rebif seems to be working and my MRI showed no new lesions? That's good.

Today I am 34

Happy Birthday to me!!

neuro news

so I got my results of the last mri. no new lesions! the neuro says the ones I do have could be causing my new issues...also sometimes you odn't need a new lesion to have a new symptom. They did see a lot of cysts on my thyroid so I have to go have that ultrasounded. is that even a word? sure it is. whatever. so that's the newest piece of bullpoop.

For the record I do feel like crap. Tire doesn't even describe how I feel. Heavy, tired, neck hurts, hard to swallow. Maybe I have swine flu. From that trip to Mexico we took. Wait, I've never been to Mexico. Big Hector was supposed to take me to see the donkey show but that was long before the piggy flu came along.

I'll update later.

Oh and I now have cymbalta and ambien added to my list of meds.

Clean the Bay Day

Today we participated in Clean the Bay Day. It was The short girls first time volunteering. Really where we were was kinda nice and not trashed at all. It was a cool day temp wise and a very nice walk.

BUT

When I get hot, which is odd b/c I don't think it got over 72 on the shore, I get tired. When I get tired my right foot doesn't want to work. When my right foot doesn't want to work I get frustrated. When I get frustrated everything seems worse. I AM NOT GOING TO HAVE FOOTDROP. This is not going to work for me.

Oh then I slept for like 3 hours and I'm still tired. Going to go to bed now. Now. Bed.

we have a 3 year old at our house now

The little girl turned 3 today. She had a rad enough party that she fell asleep in the car on the way home.

I also forgot to take my meds out so I'm late on my shot. Can't inject cold meds. Also, my stupid phone won't charge. SO, if you call me and I don't answer that could be why.

It's a good thing deuterated chloroform isn't sentient

It sucks to be forced into a strong magnetic field. It feels like you're being bombarded by something. I guess you are. Maybe having to do 2 hour long MRIs is payback for all the samples I ran in the NMR.

I really seriously hate MRIs. The dude had issues getting a line for the contrast so I have 2 yuck spots, one on each arm. THEN he comes out and says so, how long have you had MS? I say just over a year. He says Hmmmmmm. What the flock does Hmmmmm mean? How about you don't say crap like that so I worry about it for a week until I can get a follow up appt? Asshat.

So, that was my day. MRI, bloodwork, shopping. I did find a skirt, a dress and 2 good shirts.

That is all.

IT's a good thing that Meredith's memory is better than mine...

that way she can remind me to take my meme (aka medicine). See how useful little kids are?

When you don't take your neurontin on time...

like you missed it by 5 hours or so, you realize that your left hand is also numb. Interesting. Very interesting. Neurontin is obviously a miracle drug.

Zoe says...

that I have OCPD. Want to learn more about that look here. Yeah no kidding. I sat and took a long test to find out something I already knew? The next time I see her I'll see the whole report.

That is all.

My next MRI...

isn't until the 22nd of May but it's at like 5:15 PM instead of AM! YAYAY! It'll be a long one head and c-spine with contrast so I'm going to figure out the pee situation.

Why am I up? Good question. Night.

So I went and had my neuro appt

He upped my neurontin. Suggested strongly that it's a bad idea to test my limits with heat and see Dave Matthews b/c I may not come back from that flare. Put in for me to get a new c-spine and brain MRI which I forgot to fricking schedule today. Told me to be extra careful with the temp of things since I can't feel temp with my right side...bad when running a bath for the short girl and when cooking. Ummm gave me suggestions for getting myself to sleep b/c I don't want more meds. Said hopefully that will help my daytime tiredness thing but he could give me something for that if it doesn't help. He also said he wouldn't be surprised to see active c-spine lesions given my current issues. Great. Yeah I thought it too but he said it so, you know, that's different.

My bloodwork last time was fine. Rebif isn't killing my liver YAY! I do have to have bloodwork on MRI day though. Have to remember that. Hopefully I can get an appt for it that's not at 3 am. Stupid.

I also did a long appt with the doc at Zoe's. She's convinced I have something other than atypical depression that I am expected to have. For now from what I've been told she's likely wrong. We shall see. I have that follow up next week.

I feel like it's all moving too quickly. I'm hoping this dang Rebif slows this crap. I have things to do damnit.

Tonight I did a stupid thing..

(don't hit me Ms B) I took out all my shot stuff then decided I didn't want to do it. I pushed the button and injected the med into a cotton ball. Got up, and threw all of the stuff away.

Then I sat on the couch and felt guilty. I'm on this med for a reason and if it hurts to inject or I'll be sick tomorrow that's better than what potentially can happen to me in the future.

So...

I got my happy ass up, got another syringe and injected the med like I'm supposed to.

I did it. Shut up already.

Yesterday...

I got a MIRENA. No more worry about a pg thing while on these meds. It wasn't so bad to have it inserted just like Mgirl told me. She's good at telling the truth. I appreciate that.

6 more days and I will have been diagnosed for one whole year. I have my 1 year appt next week. I'm sure I'll be scheduling an MRI at the very least soon after. I'm interested to see the change. I'm sure there will be change. If I could figure out how to post them I'd share a slice or two of my brain and c-spine. It's very interesting. I need to find some kind of overlay so I know exactly what each lesion is doing...or at least what area of my brain it's possibly causing issues to.

There are several new things happening but only to my right side oddly enough. For example, when I run the short girls' bath I need to test the water with my left hand b/c my right hand doesn't gauge temp very well. Then the numbness on my right side, my whole right side, is getting worse. We'll see what they can do about that.

That is all.

I'm some kind of expert slacker aren't I?

It's been a long time since I've written anything. Nothing has changed except I got referred to a WONDERFUL gyn. She had read my history and had a lot of info printed for me to read, although I had seen it all already it's the thought that counts. She actually introduced herself and shook my hand and sat down and had a CONVERSATION with me. What a fricking concept. She said I could do what I wanted, with the exception of a hysterectomy, so it's an IUD for me and the snip for Dude. It really is stupid for me to stress my body any more and have another surgery.

I'm doing ok. I forgot how much rebif stings but, like I told my twin sister B, it's the meds and they're powerful they're kicking ass so it works for me. Or something like that. I can't remember what I ate for lunch yesterday how the hell am I supposed to remember exactly what I said. ;)

I'm reading a very interesting book

That is making me see things in a new way. Check it out here. It's interesting hearing real life convos with women who have MS too. The things I always thought I was silently bitching about aren't just petty and dumb. They're going to drag me the hell down if I don't try to manage them or talk about them. Never thought having to pee really bad all the damn time but only getting out a trickle was a big deal, just annoying. Yeah, it's both. Never thought too hard about why Meredith and I always wear the same earrings. Yeah, um, I"m right handed and that hand isn't always working all that well. And now what do I see. Slower typing with more mistakes b/c my right hand doesn't press down on keys like I think I'm telling it to. All things to discuss with the neuro. I'm also going to give it to Red to read. Some things I don't explain all that well (you know, the lost word thing I have going on which makes me sound like an idiot?)and this might do that for me.

So, I had a week of Rebif at the full dose. Flu like symptoms include body aches. Duh. Drink drink drink, which doesn't help the pee situation, and pop tylenol. That seems to be working. One week down, however many to go.

I did the full dose shot yesterday

all I felt was a stuffy nose. That works for me. Back again on the fuuuullll dose of REBIF!! Yaya! The MSLifelines nurse called me yesterday to make sure I'm on track./ I told her I hope to be on this med forever unless my liver protests. I wasn't kidding.

Things are very complicated in my head right now. I'm tired and bored and need to do something or make a change. I don't know what to do though. That's the problem. Any suggestions?

It's MS Awareness week...the 2nd thru the 9th

Just fyi. If you want to read something interesting check this link out...MS Awareness Week

Oh and I'm doing fine. 2 more 22 injections then I'm at the full dose again.

Moved up in titer values

today. 2 more weeks then we go full dose. Hopefully I can handle it this time and don't need to back down.

Today I went to get a gyn referral from my PCM. She seems to think I"m going to have issues getting more than an IUD from them since we only have one child and I'm not yet at advanced maternal age. Yeah we'll see about that.

I went to a health fair thing today...

and it was very interesting. Accidentally sat with a chick from Red's old ship which was entertaining and learned a bunch of stuff I never actually thought about before. It was another situation where a lot of the people were using walkers or canes or some other assistance device to be mobile. Then the other half looked like they were perfectly fine. That's always interesting. But, I do know first hand that just b/c you look fine doesn't mean you are. It might be easier to have a cane or a walker b/c then you don't have to defend yourself when you whine or bitch. That's a very interesting thing too. Why should you have to explain yourself to anyone. It's no one else's business why things are the way they are with you.

Meredith has a sniffle thing. Wondering if it's just b/c I've had it cold in here or if she's really sick. Either way I think I might need to just chance taking her to my appt to get a referral to gyn on Monday and risk having them cancel me when I show up with her. I can't take her to D's house sick. Stupid. Oh well. Yeah dude is in school. I made the appt when he should have been home but he won't be. Just like I have a Zoe appt on Tuesday. The sniffle better be gone by then.

Today was another neuro appt

I had to get blood drawn, we had a nice chat, he gave me a new paper script for Rebif to mail in to get bulk meds. That's about it. He said the cold thing I had the other day was likely a flare. He also said it's common for MS patients to have mood disorders. I'm sure Zoe will like to hear about that as if she doesn't already know that.

Then there's the story of when I went to get my blood drawn.

I had a corpsman who was obviously very green. He felt and found the arm vein they normally find but don't use b/c it rolls away. He sticks the needle in, one that's too big mind you only I don't say anything to help him, and he misses, he scoots the needle and misses again he digs and digs and still misses. Finally he calls another lady over who is normally the one who does it and SHE misses. She gives up and goes for the back of my hand with a butterfly like they normally do but she is sucking today and misses. Digs and misses, digs and misses then gets it. The weird part? They kept apologizing b/c I should have been in pain. I didn't feel it at all. I was leaning on the little arm thing watching Meredith eat a sucker they gave her not even wincing. That's not a good thing. Have to report that too.

Shot 3

and all is well.

Hope Ms. B is having a blast in Korea!!!

SECOND SHOT

and it's uneventful too so far.

Uneventful...

aside form a small girl who doesn't want to sleep and is getting used to not getting mooah when it's dark outside all is well. I'm so glad to be back on this med.

NIGHT ONE!!!!!!

It's baaaaack! Tonight is my first shot of my titration pack. EXCITED doesn't even describe how I feel. More in the am after I see how it goes.

Weird happenings last night

I woke up freezing cold like shivering freezing cold. It's like 3 or 4 am and I don't want to wake Red b/c he has to get up in the am for an appt. I do though and ask him to go downstairs and check the thermostat. Nope it's fine. So I get up to take a shower. Maybe a hot shower will help. Nope. I have it on hotter than normal..it should have hurt and it doesn't warm me. Not only that but I can't stand in it so I sat o the floor. SO I get back in bed, he helps me layer on shorts and pants and socks and he piles the blankets on me. I never stop shivering and it's HURTING me. He took my temp, gave me Tylenol, looked online to see what it could be. We've decided it was a short lived flare. I'm tired and feel like poop today from being so tense for so long.

So, we'll report that to the neuro.

I also saw Zoe today. Lots going on on that front. I'll see her again at the end of the month after I see my neuro and we'll decide what exactly is happening in my head. I'm glad I have a Zoe.

I got my REBIF back!!!

and I start it on Monday. I have to give my injection sites the chance to heal a bit. Copaxone beat the spots to hell.

I'm happy about it. It's weird b/c the last time I started it I was scared. Now I feel like it's something i have control over.

YAYAYAY REBIF!!!

There's this weird thing I've recently learned.

It's that having close female friends is a good thing. I used to avoid girls like the plague. History tells me that they bring drama and issues I just don't feel like dealing with to the table when you have a relationship with them. Chicks have always been the ones who are trash talking or bad mouthing people for no damn good reason. Mostly just for their own entertainment. I have very little use for that kind of nonsense. Then there's the ohhhh HUGGG me ohhhhh you're my BESTTTT FRIENDDDDD sap bullshit that I have very little use for either.

Then I changed my mind.

I've come to realize that chicks aren't so bad. Select chicks mind you.

I have the female friends who know my business. They can tell by looking at me that I'm in the worst mood ever even though I sound like I'm fine and I mostly look like I'm fine. They know that something isn't right behind my eyes...or something. They know that I need to get away. They know that I need them and even if they are having a pretty shitty time of it they give themselves to me... if only for a little while.

I have the female friends who have taught me so much about being my own person again. That I can't do everything all the time and get away with it when I'm tired or hurting or sick or cranky or or and and and or. They know that sometimes you drop one of the balls you're juggling. They know it's ok to do that. They know that it's normal to do that. They know that sometimes you have to put all of those balls down and sit down and BREATHE. It's ok to do that. It doesn't mean you've failed. It means that you're human.

I have the female friends who are perfect examples of mothers. I know every type of mother. I know the ones with no kids (yeah you can still be a mother with no kids IMO)I know the ones with step-kids. I know the ones with 6 kids. I know the ones who are just as scared as I am when one of their kids is sick. I know the ones who fight with themselves about which school to send their kid to or if that's even a good idea. I know the ones who wonder if they should keep working or if they should stay home or if they should try to do both. I know the ones who doubt every little decision they make BUT, in the end, they make a decision and they move on. Because that's what you do.

I love them, the women who are my friends. Because they let me see them when they are vulnerable. Because I hold them close to my heart. Because they don't doubt me. Because they love me. Because they trust me. Because they accept me for who I am. Because they hold me up when I don't want to do it myself. Because they don't think I'm weak for hurting or crying. Because they let me in.

Because.

Weird.

It's ok.

It's amazing...

how much the people you've met online can influence your life. It's also amazing how much you can click with someone you've only seen irl one time. How they can know things about you that no one else does. How they can share similar thoughts and feelings. It's just amazing.

I'm tired in every way you can be tired. Drained and I don't have enough reserves for anything else. When and if the other shoe drops whomever is in my line of sight is in for it. Seriously. Hopefully something can be done about this relatively soon. Hopefully. I'm not counting on it though b/c sometimes people are flaky.

I called and asked for my Rebif back. I have to start over again with the titration pack but that's fine by me. I have to get a gyn referral and see what kind of bc they'll let me have. Hopefully a tubal. That would be ideal. Actually a hysterectomy would be ideal but I doubt they'd do that for me. Fuckers. Yes I just said that.

I have 30 more days of Copaxone

then that's it. I think I insult the Shared Soultions peple every time they call to check on my progress with it. NOthing has changed. I blow their theories out of the water. Unfortunately for them they have to report everything to the pharma company. Hey, not everyone likes their med. I'm not going to fricking lie.

Where have I been all my life.

Right here. Waiting.

I have on bottom earrings...

b/c we're going to a wedding this weekend. How pathetic is this...they HURT. I haven't worn bottom earrings in a long long time. So long that I can't find all the ones I normally wear b/c when I unpacked the jewelry box I put it someplace stupid. So long that I have an eraser on the back of one of them. Oh well, it'll get better.

Sitting here waiting to go to music class, then Red's appt then we'll head out of town. It should be a decent trip even though I don't feel like sitting in the car. I get to go to Hobby Lobby and eat wedding cake. Two very good things.

We never installed the porch light "Icomeonwhenitgetsdark" thing. OH well, it'll be obvious we're gone. Good thing our neighbors are hella nosy.

I've been doing some reading

and decided that when the time comes I'm going back on rebif. I'll deal with all the things it does to me b/c they were all better than what copaxone does and it's a more aggressive med. I need to feel like I'm attacking this damn disease. It decided to try to attack me, well hell I can do that right back.

That's my middle of the night, can't sleep although I'm tired wisdom. I'm also going to work out regularly again no matter how I'm feeling and take the provigil from the doctor. I can't feel like this any longer. I can't let everything pile up on my all at once and not fight it off. That's pathetic.

In a few weeks I'll know exactly how my year will go. I hear the jeopardy theme in my head. Can you hear it?

Meredith's room...

so far. I still need to cut out the shape for her headboard and upholster it and move the train table back downstairs, and put some kind of quote on the wall with the cricut vinyl. It'll happen.

Oh and the dollhouse is a nightlight. I put it up high b/c she like to make tetebell and some penguins play in it. It's not meant for that.

Happy New Year

It's 2009. Let's see what 2009 brings. Hopefully good stuff for everyone I know. And for me too. :)