Go go medicine

The last time I saw dr W. was for my eyes a couple of weeks ago. While I was there I also mentioned my incontinence and fatigue reaching a low point. He gave me something for the fatigue and it has helped greatly. The stuff I was on before is still have to have coffee with it to make it through the day and that was just not cutting it. So I’m glad I’ve switched. I haven’t had any caffeine since starting it and I’ve even been able to get up and do my Bible study in the morning. It’s still hard to wake up but once I get going I’m good until around 8-9 pm. I probably start lagging around 5, but don’t notice it as much with dinner and bedtime routines happening. So glad I switched. 

Macular Edema

Post dated: December 20, 2017

So I have macular edema. It started about a week ago. I noticed it at the last day of bsf for the semester (December 12, 2017) that there was a spot in the middle of my vision field in both eyes that was gray and blurred out. I tried to wait it out, which I regret now, but it seemed like a good idea at the time. Got an appointment at the eye doctor yesterday and he said everything looked fine. But obviously my vision was impaired. So he suggested it be neurological and I see dr W. So I did... today.he looked at my eyes. Had me do a vision test on a screen looking at what must have been a dot or square then looked in my eyes and said That I had macular edema due to the gylenia. Great. So now I have three months to rethink my plan of attack for MS. I’ve stopped taking it right away but now it’s back to the drawing board. I really don’t want to do shots again. So there are two other pills out there that might work for me. I just have to learn more about them. If y’all have any info about the pills for relapsing remitting MS please let me know!  

On a good note I did get something to help me stay awake during the day. So there’s that. 

Giving up

I'm tired, but it's not as bad as it used to be. I'm not a zombie, but I don't want to do anything... At all. I don't care about the house anymore an it shows. I don't care about Erin's potty training either. I've given up on them both.
The house is a wreck and all I can do is cringe. I don't lift a finger to clean it because I don't want to exert energy on something that'll never get done. I really wish I could just set fire to the damn thing and be done with it.
And as for Erin, I've given up on her too. She was doing so well only to keep having accidents and I don't want to care anymore... So I don't. And it kills me inside knowing that she can do it but doesn't. She's had days without accidents but she ha stopped caring to be a big girl so I've stopped caring too.
I wish I could have someone step in an teach her without me. I don't want to exert the energy on her anymore.
So it scares me that Paul is showing interest in the potty. I don't want to teach him either. I don't want to do anything. And I don't care.

Latuda

I've been taking latuda for about two months now. Started out at 40 mg then upped it to 80. It's been better and worse than the geodon. I don't get the high I got from geodon so I'm quick to my mood swings still. But I am awake and able to be actively doing things, which is nice. The only other problem is the cost.
I wish I could find something that made me feel like the geodon but not drowsy like it did. Well. We are going to try a higher dosage the doc says so I just took my first 120. We shall see if this expensive stuff works. If not I'm gonna give it the boot.
Oh and on geodon I actually lost weight. With the week I took off of geodon before starting this I gained 10 lbs and with this I have maintained and not lost.

Control

One of (what I consider to be) my greater strengths is also one of my greatest weaknesses. My need for control has always been an issue with me. And when I feel like I'm loosing control I go crazy.
I think that's why I was the rock at patty's funeral and why I hate to cry in church.
I came to this realization tonight with a little help from my friends. No, they didn't laughingly point out this fault to me. I realized it on my own while I was out with them having a margarita.
You see, even now pride gets ahold of me when I tell you that my 5'3" frame used to be able to drink grown men under the table (ok, maybe not grown men but frat boys are close enough in this regards). I lost control once and got $h!tface drunk... And that was when my Nana died (vodka has never looked the same since).
Anyway, I was out with the lylas ladies having margaritas when it hit me like a load of bricks. I started feeling a bit buzzed, which was nice, but then also nauseous, which was not so nice. I was kicking myself wondering how this could have happened. Well, for starters I haven't really drank since my honeymoon other than half a margarita the cinco de mayo after my first was born. But I just kept thinking "this is rediculous! I should be able to drink more". But not only could I not drink any more booze, I couldn't bring myself to eat anything else either, even though I knew I needed it to help. I just felt if I put anything else in my mouth that something was going to come back out of it. Not a fun feeling, despite the fun environment.
Anyway, as I sat in the bathroom stall praying that if I was going to puke I do it their rather than my ride's car; I realized how much I needed to feel in control. You see, in the group was my mother-in-law, who is a way cool chick, and I had never really lost it in front of her, other than crying. I didn't want to loose my sense of control in front of her, in spite of knowing that she wouldn't care and we'd all get a big laugh from it later.
You see, my need for control is crippling. It prevents me from doing things and experiencing life (ok, puking your guts out isn't necessarily experiencing life, but you get the gist).
It is a flaw as much as it is a strength.

Geodon

So I've recently started taking geodon for my anger and I believe it's helping. The only problem is how tired it makes me feel.
I was getting so angry that I felt that way most of the time. So my pdoc started me on something (I don't remember now), but it wasn't working. I was still feeling extreme anger. So he put me on geodon.
Let me tell you, I felt great! I felt like I was on a manic high without the crazy. Only problem was the extreme fatigue I was now experiencing. At first I blamed that on my ms. I knew it wasn't a normal fatigue from the way it felt. I couldnt just ignore it or take vitamins or caffeine against it. I would literally have to go to sleep. My eyes felt so heavy they wouldn't stay open. Then I started noticing it was happening around the same time every day. Still blamed it on the ms. Until I pushed a dose back by a couple hours (I had been taking an 80mg dose 2x a day). Then within 4 hours of that I felt the fatigue set in. Luckily I made the connection at my drs and he gave me some lower dose samples.
I'm still getting tired even though I'm on the lowest (40mg). And I know I want to be back on the 80 cause how it made me feel (super great: serine). But I dont think I can get that high until I get this fatigue under control.
I hope it only takes a few weeks, otherwise I'm gonna try something else and hope it gives me that high again.
It was great. I felt calm and happy. Better than any high I'd have before but without it being manic. Just happy and calm. I miss that feeling.

What is it?

I worry... I worry a lot. I hear the radio, but it's not on. I hear a conversation, and it's not in my head. I follow the sound, it has a source of nothing. But I swear it's from right over there. It just makes me more paranoid. Is someone there?
I know I should take my medicine, but it's to the point now that I'm afraid. And I know it's stupid to be afraid, but I am. What if it's the wrong medication? I need to know for sure. But I need to know soon, and durring the day I dont want to think about all the things I think about. I don't want to feel the way I feel when I get mad or angry or upset. I just want to happy times. So no, I dont call the doctor, because the doctor wont be able to see me right away. They'll want me to start my medicine without testing to see if it's right. It's not right... it can't be.
It makes me feel so numb, not like the other stuff, but just blah. No ups... no downs.... no nothing. just blah. I want to be happy. I want to be organized. I want to just be rid of the rest of the stuff. I hate going in and they look at me like I'm crazy. I'm not, but I don't know what I am. I don't want them to judge me, so I don't want to tell them how I feel, or what I think, or what I hear. I'm not crazy. But that's what I fear.
Is it wrong I feel the way I do? There are so many questions that I can't control. Can I just curl up into a ball and stay there. just let the world move around me.
Give me peace. Give me rest.
But my children... I love them, but they torture me so. I know they don't mean to, which makes it even harder. If I knew they meant to do the stuff they do, I mean, really mean to do it... spitefully, I would just leave. I would just up and go. I've thought about it plenty of times... just leaving. Just riding myself of all this stuff, all the problems, and worries on my mind. But then I think about them, and yes, they are some of those things, but I don't think I could leave them. I don't want to miss them or any part of their lives. But I want to feel better and I think the only way for me to do so is to get far away from mine. I ask for patience, I ask for help. All I feel is guilt and sadness. I don't want ot leave them, but I need to get away. Just for a little while.
I wish I could pause time so I could go away and when I came back nothing will have changed or happened. They will not have grown up any or aged, and I won't have missed a moment of their lives. But I fear saying stuff like that too because that isn't how reality works, and when something doesn't grow up or age it is dead... and I do not want that for my children. The thought scares me to even think the words. Protect them while I'm gone. Protect them from me. I just want to run and go, but I don't even know where. I'm just so tired. Leave me alone.

MRI to be

So yesterday I met with dr Webb and he said I should get an MRI. And I completely agree.
I know that sounds weird. I kept thinking I was doing so well but when I had to look back and tell him all possible ms instances ... Well, it just makes me depressed.
My speech capabilities and mental sharpness has noticeably decreased. It takes me longer to remember or think up certain words. And I don't notice things that I should that are right in front of me.
I've been having slight irritation with my left eye: it sometimes feels like it's blurry around the edge, like something is smudged on my glasses.
I've got the tingling in my legs a few times but not long enough for it to be noticeable.
And as for fatigue? Well I've always dismissed it as the fact that I'm now a mother of two.
It was only when I started telling him all those instances that I realized just how bad it was. Those combined with the bump I got from jumping in the car too fast made him want me to get one.
So we will see how my brain has changed or if it's all in my head.

In My Head

I'm trying to keep things in my head so they don't just pop out. I need to think things over and not act impulsively, a bad habit from bad times that needs to be rectified.
Just gotta get things figured out before I explode!

What If

I loved reading Shel Silverstein poems when I was growing up, and this is one that still rings true. With my current state of nesting going on, I thought I'd share it with you:

What If
by Shel Silverstein

Last night, while I lay thinking here,
some Whatifs crawled inside my ear
and pranced and partied all night long
and sang their same old Whatif song:
Whatif I'm dumb in school?
Whatif they've closed the swimming pool?
Whatif I get beat up?
Whatif there's poison in my cup?
Whatif I start to cry?
Whatif I get sick and die?
Whatif I flunk that test?
Whatif green hair grows on my chest?
Whatif nobody likes me?
Whatif a bolt of lightning strikes me?
Whatif I don't grow talle?
Whatif my head starts getting smaller?
Whatif the fish won't bite?
Whatif the wind tears up my kite?
Whatif they start a war?
Whatif my parents get divorced?
Whatif the bus is late?
Whatif my teeth don't grow in straight?
Whatif I tear my pants?
Whatif I never learn to dance?
Everything seems well, and then
the nighttime Whatifs strike again!

Time

Why am I still awake?! It's so late it's early. The sun will rise any minute now, and I'm tired, but I can't go to sleep! Grrr... I hate this. Part of it's due to massive amounts of acid making it's way back up my throat (gotta love the pregnancy heartburn).
But most of it's due to anxiety. I'm going to have to take something for it tomorrow night, because tonight is pretty well shot for me taking anything. I woke up around 3 contemplating paint stuff, and ended up touching up the tree trunks for a little bit. Then decided to wait and let the paint dry... I was going to do some leaves, but I'm leaving that for now (hahaha). I think I will try again to fall asleep.

Busy Busy

Sorry I haven't been one for updating lately. I seem to have become super busy. But the girls (dogs) are tuckered out and not really wanting to move around the house, Chris is away late at work, and I've got the computer glued to my lap... so I'm going to attempt it.
With the holidays passing by with Chris' vacation time the business has come and hopefully stalled for a little while. But I know it'll be the new year before I can put the breaks on. I mean, we've still got the cotton bowl and then LBG will be coming any time after that! Oye... can I make it? I hope so.

ugh ickie

I had so many ideas for what to do today... and yet, I'm feeling yuckie. Maybe after a quick shower I'll feel better. But over the past few days my stomache (not the baby part of the belly) has been yuckie. I've felt like throwing up a couple of times due to heartburn, and it's been extremely uncomfortable. If I'm not feeling better after a bit of a nap (after the shower) I'm going to talk to the doctor again. It really just feels like I ate something wrong or too much, so I'm not horridly worried.

Twitch, twitch

My left eyebrow is doing this weird twitch-y thing. Uncool and unfun. I must be stressed. Or is it a sign of hunger? :) j/k I know I'm a bit stressed right now. It's just odd when one actually gets a twitch from it. Especially since now I'm trying to relax, and the twitching doesn't make it any easier to relax. **sigh** dunno.

Pregnant vs MS

Today is the first day during the pregnancy that I’ve felt like I had MS again. I was tired, and my legs were all tingly for a few hours. Everything felt heavy, and it was hard to do stuff, even decorate the miniature tree we have. I couldn’t bring myself to tackle the big one. I resigned myself to taking a nap even. First time in a while I’ve done that.
But I have to look at not what’s happened today, but this past week. It’s Thanksgiving week, so of course it’s been busy. Yes, I’m not working, but that didn’t stop me from having a whirlwind Wednesday of cooking up cookies, and making mashed potatoes… and having to run around and find the ingredients I had forgotten. It was a stressful Wednesday for me. I had also taken the dogs to the kenneling place early that day.
But yeah, I forgot mashed potatoes needed milk, so I (stupidly… never ever do this! Even though everything turned out all right) left them on the stove to boil while I went and got milk at McDonalds. I didn’t need a lot, like half a cup, otherwise I would have just ran to the store. But it was just as quick, and I got the right amount. Problem was my loving husband, whom I love, felt the need to show me something when I was getting ready to leave. It took him a bit of time to get the box of goodies from the freezer. Meanwhile, I just kept getting more and more adjectated because I knew there was stuff that needed to get off the stove and it was past the time they should have been on. My head was reeling with thoughts of a burning house due to overdone potatoes all because I needed half a cup of milk.
When I finally got back to the house, all was fine... except my nerves probably. I know I was in a bad mood, but I wasn't mad at Chris, I just kept thinking how stupid I was for doing something like that. I promise I won't do it again.
And I've gotten used to schedules (for the most part) and so when we didn't leave on time it threw me for a loop again. Why was it taking so long to leave the house? I couldn't even tell you. It just did. We got there, to our dinner destination on time and everything was good. I just felt stressed the whole day, when I shouldn't have. But I did it to myself.
Of course Thursday was Thanksgiving, but not a lot of stress there other than "what do I do?" Everything was already made, or in the final stages when we got there that morning, right in time for breakfast. That fact didn't bother me, I mean, that's why I had cooked the day before... so it'd be easier on the day of. So it was a bit more relaxed, but with all the cooks in the kitchen I felt somewhat useless. So I started taking pictures, until my camera battery died. Then I helped by chopping veggies. Other than that, it was a pretty relaxed Thursday. But emotions were high on my end, and I think it was due to residual bad moodiness from the day before. I was easily annoyed and had to go on a walk to calm/cool down. But it didn't completely work, and I just had to have my loving husband remind me that I was a bit pregnant and due to emotional tendencies. Everyone went on a walk after the dinner and had a grand time looking at one neighbor's extravigant light show. Very impressive, and the dinner together with friends and family made me feel better. Over all, Thanksgiving was a good day.
Then came Black Friday... a stressful day in general. But I thought, from the talk the night before, that it would be actually very reasonable. It seemed to me that Thursday night we had all made a very structured plan. But come the day of, and everyone was confused. "Where are we going? Where are you going? Where do we want to meet? But I thought..." etc. urgh. I thought we had a plan, but it turned out not. Everything still worked out. We went the places we wanted to without hassel, just not in the time frame I thought we had set out for ourselves. This meant that Chris and I left "on time" rather than earlier. The on time schedule meant we would get home in time to pick up the dogs, which was the main thing. But if we had left earlier we could have taken the long way home through Yale and stopped by my family for festivities. But it turns out it was better we didn't anyway. So in retrospect it all worked out for the best. But durring, it was a bit stressful for me.
So three days of on-again off-again stress, yeah... I can see why I was tired today. I have to watch myself and have to remember I'm not Super Woman. I may have the super power of "creating" (not in the God sense, just biologically/scientifically) life, but that doesn't mean I don't need a nap. And sometimes I have to remind myself of that. Because I kept sitting there today going "why am I so tired? I'm not doing anything, and I haven't done anything today." It didn't make sense, till I sat down and starting typing this out. Now it makes total sense, and I'll just have to remind mysef of it next year... and this year at Christmas. Relax, Jess... take a deep breath and nap if you need to. It's perfectly fine, and understandable, considering... I know, I just talked to myself. But it made me smile. Of course now my big stress is that I took such a great nap and can't get to sleep. It'll probably be another hour, but I'll get there... Night.

The Mayonaise Jar and 2 Cups of Coffee

A friend sent this to me, and I've seen it before. I thought I should share it with ya'all. Enjoy and remember it.

When things in our lives seem almost too much to handle, when 24 hours in a day are not enough, remember the mayonnaise jar and the 2 cups of coffee.
A professor stood before his philosophy class and had some items in front of him. When the class began, he wordlessly picked up a very large and empty mayonnaise jar and proceeded t o fill it with golf balls. He then asked the students if the jar was full. They agreed that it was.
The professor then picked up a box of pebbles and poured them into the jar. He shook the jar lightly. The pebbles rolled into the open areas between the golf balls. He then asked the students again if the jar was full. They agreed it was.
The professor next picked up a box of sand and poured it into the jar. Of course, the sand filled up everything else. He asked once more if the jar was full. The students responded with an unanimous "yes."
The professor r then produced two cups of coffee from under the table and poured the entire contents into the jar effectively filling the empty space between the sand. The students laughed.
"Now," said the professor as the laughter subsided, "I want you to recognize that this jar represents your life. The golf balls are the important things--your family, your children, your health, your friends and your favourite passions--and if everything else was lost and only they remained, your life would still be full.
The pebbles are the other things that matter like your job, your house and your car.
The sand is everything else--the small stuff. "If you put the sand into the jar first," he continued, "there is no room for the pebbles or the golf balls. The same goes for life. If you spend all your time and energy on the small stuff you will never have room for the things that are important to you.
"Pay attention to the things that are critical to your happiness. Play with your children. Take time to get medical checkups. Take your spouse out to dinner. Play another 18. There will always be time to clean the house and fix the disposal. Take care of the golf balls first--the things that really matter. Set your priorities. The rest is just sand."
One of the students raised her hand and inquired what the coffee represented. The professor smiled. "I'm glad you asked.
It just goes to show you that no matter how full your life may seem, there's always room for a couple of cups of coffee with a friend."

Positive Results for FTY720 - MS Oral Drug!

I got this update in an email today. It's also available from the NMSS site. It's exciting to see the results going so well!

Sep 30, 2009
Positive Results Announced from Phase 3 Trial of Fingolimod Pills in Relapsing MS
Novartis International AG announced today that oral FTY720 (fingolimod) was able to significantly reduce relapse rates and slow disability progression over two years in a large-scale, phase 3 trial involving 1,272 people with relapsing-remitting MS. According to a company press release, safety data confirmed a positive benefit-risk profile for the lower of two doses tested, and the company plans to submit applications to drug regulatory agencies for marketing approval of the potential therapy at the end of 2009.
Background: FTY720 binds to a docking site (sphingosine-1-phosphate receptor, or S1P receptor) on immune cells, including T cells and B cells, that have been implicated in causing nervous system damage in MS. The drug appears to induce immune cells to remain in lymph nodes, where they can do little harm, preventing them from migrating into the brain and spinal cord.
Positive results from an earlier phase 2 study led to several large-scale phase 3 trials. Initial positive results from the TRANSFORMS study, comparing two different doses of fingolimod with Avonex® (interferon beta-1a, Biogen Idec) over only one year were presented at the American Academy of Neurology meeting in spring 2009. Adverse side effects seen more often in the fingolimod treatment groups in this trial included temporary reductions in heart rate at the start of therapy, small increases in blood pressure, and a few cases of macular edema (swelling of the back of the eye). Two deaths from herpes infections occurred in the group taking the higher dose of fingolimod, and seven cases of localized skin cancer occurred in the fingolimod groups.
This Study: The FREEDOMS study involved 1,272 people who had had symptoms of relapsing-remitting MS for an average of 8.2 years at the start of the trial. The participants were randomly assigned to one of two different daily oral doses of fingolimod or inactive placebo. The primary endpoint established for the study was the rate of relapse. Other endpoints measured included changes in disability progression, safety and disease activity detected with MRI scanning of the brain.
According to a company press release, results showed that after two years, the drug significantly reduced the annualized relapse rates by 54% (lower dose) and 60% (higher dose) compared with placebo, and reduced progression of disability by 30% (lower dose) and 32% (higher dose) over placebo. In terms of safety, the press release stated that there were no cases of macular edema or melanoma in those taking the lower dose, but further information about these potential adverse events was not provided in these initial results. There were reversible elevations of liver enzymes, lung infections, and mild elevation in blood pressure observed in those on active therapy. Three people died during the trial, one on the higher dose and two on placebo, but these deaths were not thought to be attributable to the therapy. The press release states that future development of FTY720 will focus on the lower dose.
Further details about both benefits and adverse events are expected to be released at an upcoming medical meeting in 2010. Other phase 3 clinical trials of fingolimod, including one involving people with primary progressive MS, are still under way, as are extension studies involving those who’ve completed trials. These should provide additional data on safety and efficacy.
Comment: “This is potentially a breakthrough study, and we look forward to seeing further details when they are available,” said John R. Richert, MD, Executive Vice President of Research and Clinical Programs at the National MS Society. “Having oral therapies in the MS pipeline is real progress, and it should increase the number of people who choose to begin therapy earlier and who stay on therapy, which our experts say is the best way to combat future disease activity.”
Avonex is a registered trademark of Biogen Idec

Doc Day

Ok, I am sick and tired of being sick and tired! And I don't want to keep taking things that might hurt my baby. I've resigned myself to going to the doctor. I'm a bit nervous, because I also want to ask them about getting a flu shot. I've gotta stop coughing all the time. It hurts my body. I know that it's not supposed to be able to hurt the fetus, but I don't want to take any chances... and I want to stop coughing!
Doctor's office, here I come.

Sinus Sickness

I've been sick for a number of days. I'd say since Wednesday night. Wednesday the 16th. So, yes. It's been over 7 days since it started. I was going to get my fluu shots done, but it seems that since I'm since I'm not going to. It wasn't supposed to last this long, urgh. It sucks, but it's getting better every day. It was getting worse, but now I'm better. It's just major drainage. I wasn't able to lay down, I had to sleep sitting up, which is not that comfortable. I was waking up every couple of hourse, and still do, but now it's every four hours, not two. I'm taking all sorts of medicine, yes meds that are okay for preggers. Tylenol and some Sudafed. It was so bad I actually struggled to breathe a little bit without coughing when I was sleeping. I was grinding my teeth to ease the pressure, but that's not good, so I even had to go get a mouth/teeth guard.

New Computer

Yeah! I've got a new computer! I'm so very excited.
But you know me, of course I'm debating if I got the right one. It was between this one, witht he blue-ray player and bigger screen, or the one that was more compact. I'm pretty sure I got the right one, because it's got all the bells and whistels. The only reason I debate the other still is the compactness. I had complained a lot about my last one (which is the same size) being so big and heavy, and thus hard to tote around. And the fact that this one is the same size kind of makes me go... hmmm, maybe I should have gone with the smaller one, except it doesn't have the bells and whistles. So I ask, did I make the right decision?
Yeah, of course I did... right?