Thursday, March 15, 2018

Round of steroids

Since the Monday before this Monday I’ve been having an episode.  I woke up and thought I was just out of joint from sleeping in the bed funny ( C had rotated the mattress and I was just coming back from a trip so a different bed over the weekend). So my left fingers were numb and my right leg had pins and needles. The next day I was walking with a limp due to the left side and my arm was not functioning right. I started taking some cbd that Tuesday and I could feel it work within 30 minutes but not take things away completely.  Wednesday came and went and I was worse. By Thursday I couldn’t grip anything and my fingers were turning blue on and off. That’s when I decided the cbd just wouldn’t cut it. I needed steroids. So I called dr w Friday and got a prescription. Slowly I’ve been getting my grip and walk back. I can’t run yet. Not that I’m much of a runner anyway!  But it feels like I have a rubber glove on as far as feeling anything with my left hand. But I know it’s getting better so that’s what counts. It’ll probably be 3-5 more days before I’m all the way back to normal. The biggest side effects have been depression and itchyness. I have been really down and don’t want to do anything but sleep last couple of days. My appetite isn’t bad so that’s good. I think the itchiness is from the nerves being reactivated. 

Sunday, January 07, 2018

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. 

Sunday, November 18, 2012

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.

Wednesday, October 03, 2012


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.

Thursday, June 07, 2012


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.

Wednesday, April 04, 2012


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.

Thursday, January 12, 2012

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.