MS is Really Starting to Piss me Off

Today has been one of those day's, ya know! A day when everything else wins and your willpower, strength, and determination, is no match for the bullshit in your life.

I'm not here asking for a pity party, or even to say that my kick ass attitude is no more. It's just another one of those "I am Human" posts that after I've completed it I feel so much stronger. It's sort of like talking to a shrink. They listen, don't talk back much (other than the occasional question) and in the end, you feel like a thousand pounds have been lifted off your shoulder.

Thank you blog. For being so therapeutic for me.

Today, I have written in my MS Journal more than I have all year. Tons of new symptoms, weird ones. The reality hit me today. Until today I thought, "I'll just ride out the rest of my life with Mr. MS on my shoulder. He's not very bothersome, other than the occasional migraine and stabbing pains in my feet, I can handle him. He'll remain dormant for most of my life, only causing trouble here and there, and I can handle that."

Today I thought, "Fuck! Am I going to be one of those people? One of the MS'ers who's symptoms are actually visible to the public. Someone who can't manage on their own." Ugh! It sucks to be in a funk but it happens.

Hello funk! How are you?..... Really? Well, beat it!!!

I'll be calling my neuro tomorrow if I wake up for a second morning with numbness on my face. Nice right? That's a new one. The other day I also had a feeling on my right shoulder that felt like someone had shoved me. Then that shoulder went numb, only lasting a few minutes but still enough to notice and make note of. I've also had tingling on the bottoms of both feet, and a static feeling moving all over my thighs (front and back) and on my butt.

That's 4. FOUR! Four new things written in my journal between the 19th and now.

Ahhhhh....I am done venting. My honey brought home some chocolate and merlot which is not good for the body but it's going to do wonders for my mind and my soul. Thank you baby.

Rehearsing My Lines

Dear New Neuro,

As you can see from my charts, I was diagnosed with RRMS on October 29, 2009 after numerous tests and discussions with your former co-neuro. I started Copaxone on November 7, 2009 and to this date, I have not missed any injections. Amazingly.

My New Symptoms Include -

Worsening of Blurred Vision: The blurred vision that at one point seemed to happen 20 or 30 times a day, has increased to more than 100. I don't count but it's a significant increase and my number is not an exageration.

The length of time my vision is blurred has also increased. From maybe a second or two, to five+ seconds. The blurred vision is unpredictable but does seem to worsen in the evenings when fatigue sets in. It is not painful but extremely annoying.

(I hope that before my appointment in February I can get in to see an Ophthamologist. I think of all the symptoms I could possibly have, interruptions to my eye sight is the one that saddens me the most. I love seeing my beautiful family.)

Frozen Finger: This may just be a nerve thing but out of no where my right index finger will be freezing and the rest of the fingers on my hand feel like they're at a normal temperature. It takes about 20-30 minutes for the finger to 'heat up' again but during this time, it hurts. Maybe like frostbite? I've never had frostbite before so I can't really compare, just guessing.

Dazed Vision: This is a new one for me. You know when you're staring off into space and you can see everything perfectly fine yet, everything is sort of in a fog? It's kind of like that. It happens sporadically and quickly if I don't keep my eyes moving.

I feel a bit 'spacey' during it but I'm still completely aware of all around me. I can usually blink out of it pretty quickly but again, if I don't keep my eyes moving, I'll fall right back into it. Is that fatigue? I have no idea.

High-Pitched Squeal: That's the gist of it. It's only happened maybe 2 or 3 times over the last year but it's something I forgot to bring up in the beginning.

That's almost all of it. Last night while I was sleeping I was awaken by what felt like a thousand tiny needles stabbing me on the bottom of my big toe. Or an electric shock. Nice! Lasted only 2 minutes or so and I can't remember which toe it was as I was half asleep.

(Just put Bean down for a nap and almost fell. My right knee gave out, worse than any time before. Hmmm...I seem to have a lot of issues with my right side. Another note for the Neuro.)

Whew!!! MS is tiring. The actual symptoms are almost as bad as tracking the damn symptoms. LOL! Ah well, it is what it is.

Is It Getting Worse?

Having to pay attention to every single ailment can become extremely nerve racking. Maybe I don't need to pay attention so much. But, maybe I should.

I don't really know.

I find myself providing great support to others but I am still here trying to find my own way through it all. Still learning and trying to understand what I'm really supposed to do. How am I really supposed to feel? And how much attention given to the MS and the symptoms that accompany it, is too much?

All great questions that I think I'll have to learn the answers to on my own. I'll have to find my own way. A new way, a new normal.

For the last few days I've been noticing that my blurred vision has become more frequent and more disturbing. Lasting longer, being blurrier, and at times, pissing me off. I've also noticed that when fatigue sets in, it gets much worse. But then I calmly tell myself, "It will pass. Don't stress. It will pass."

And it does. But not as quickly as it use to.

So what do I do? I'm not use to this 'paying attention' thing. And when I tried to pay attention to every single ailment prior to my diagnosis, I drove myself insane. I had a notebook I walked around with and in some sense, that notebook was like my lifeline. Sort of like a terminally ill person who must walk around with their IV cart.

I didn't want to be tied down. I did it for a month or so to satisfy my neuro and after he was happy, I was done. I don't want to be that way now but I do see the importance of keeping track. I think. I mean, I need to know what's MS and what's not, right? I need to inform my neuro of new symptoms, exasperated ones, and whatever else. And he'll determine what's important information and what isn't. Right? I hope so.

So hear I am, with what I think is worsening symptoms. What does that mean? Am I in a relapse? I have no IDEA! I'm clear of one time (maybe two) that I was in a relapse. The time my vertigo lasted more than 24 hours and sent me to my GP who said, "You may have MS". And the second was a couple of months after that when for about 4 days straight I couldn't keep anything down and was also experiencing vertigo.

Some think I'm a little WACKO for paying such attention to my body and symptoms. I kind of just think I'm thorough. Either way, I think some symptoms are getting worse. So I'm just going to have to focus a little bit more on ignoring them, after I write them down for my neuro to look over.

Let's Talk About S....

Get your mind out of the gutter! LOL!!! I'm talking about

Symptoms

I think I'll keep the other "S" word private, since I am technically still registered under "family friendly". And my Mom reads this. LOL!

I've been promising to share my list of symptoms but until now, I had forgotten. Sorry. We can add memory loss to the list, I guess. Here's some of them...

• Numbness in Arm and Hand
• Blurred Vision
• Vertigo
• Heat Sensitivity
• Trouble Sleeping (has improved)
• Hands Shaking
• Migraines
• Frequent Headaches
• Hallucinations
• Pins and Needles feeling on Hands and Feet
• Complete Loss of Peripheral Vision
• Pain in Legs, Back, Neck and Back of Head
• Constant Ringing/Buzzing sound in Ears
• Floaters
• Dizziness/Lightheaded usually when Standing
• Tunnel Vision
• Memory Loss :)
• Heart Palpitations - I'll confirm this next week with my neuro, not sure if it's a MS thing yet.

So there you go! That is a partial list of symptoms that I deal with, some everyday. And please don't freak out if you DON'T have MS but you have some of these symptoms. Diagnosis of MS involves a lot of tests, as I'm sure many of you have read about on this blog. And I don't just have the symptoms for no reason, I have them because of the lesions on my brain and spine.

My freakiest (but oddly enough, easiest to handle) symptom has been the hallucinations. How would you like to be snuggled-up to the one you love watching a movie late one evening and out of your peripheral vision you see this...

That's one scary S.O.B

Mine was a little worse though because the one I saw had dreadlocks the color of Carrot Top's hair. He was standing in my dining room and was about the height of the bar. The hallucination was very quick but I saw every bit of him. He was ugly like the picture above, and wearing pretty much the same thing. Dark clothes and a dark hat, minus the gold buckle on the front.

All of my hallucinations have been pretty freaky. I've had about 4 since May-ish of this year. They freak me out for a moment but then they're done. That's why they're the easiest of my symptoms.

The most annoying...

Blurred Vision - If I had to put a number on it I would say this happens 50-75 times a day. It's freakin' annoying!!! Most of the time, it's very quick, maybe 3 seconds and then my clear vision will come back. Maybe 15 of those times are longer, lasting 30 seconds to a couple of minutes. Before my diagnosis I blamed it on dry contacts. Some days I was cleaning them 3 times a day. Somedays I catch myself still trying to blink away the blur in hopes that it's just something on my lense. Of course, it doesn't work.

Pain - Pain, pain, everywhere. Ugh! I'm sure you can understand why this is one of my least favorite symptoms. Who wants to be in constant pain? BUT, I'm visiting my physical therapist for the first time tomorrow (Thursday) and hopefully he/she can help me work through it. I think I am most excited about this appointment because for me, it spells R.E.L.I.E.F.

Ringing/Buzzing in Ears - This is 24/7. Fan-Freakin-Tastic! Again, you can understand this one. It has been going on for months now and it never stops. The best way to describe what I'm hearing, turn on your BIGGEST TV and mute the audio. Then, go stand near your TV and listen to the sound it makes just from being on. That is the sound I hear 24/7. It can be ignored but at night, when the house is quiet, it's not!

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All people with MS experience all different symptoms. There are no two patients alike. That is why it's so difficult for a doctor to predict what your future may hold, what your symptoms may be, and how your body will respond to them.

In my eyes, it's sort of like a game of Russian Roulette. The lesions are the bullets, we may never get another lesion, or we may get one. Or, we will get many, many more. And when that 'bullet' strikes, it'll effect yet another thing that we currently take for granted.