I See A ComeAPart Comin'

Gilenya is an evil drug.  I sure hope it's 'helping' in some way because it sure is NOT in so many ways.  Constant back pain, loss of appetite, depression, fatigue, and ticked off that even though I can't eat much I'm certainly not losing any weight.

As I continue to check on the status of my disability claim, there are still no answers.  They are, once again, awaiting records from one of my Doctor's.  Called his office, "it gets done in a certain order, and only on Wednesday's".  Seriously, they have been waiting for it since mid October.

The lack of fundage is ringing loud & clear now.

This is a prideful thing, but I have always been 'the breadwinner'.  I've been very blessed to have had steady, good paying jobs for 32 years now.  I have never NOT worked, except for my maternity leave of 6 weeks with both of my kids.  Even then, I did something from home, anything to make a little money while I was out.

I am in NO way trying to say that my husband does not work his a$$ off, he just has other responsibilities, and he's not even remotely paid what he's worth & for all he does!  Let's make the CLEAR!

I, now, am a huge liability.  Not pulling my weight in pay, housework, anything in general, doctor bills, prescriptions, and just being a general burden.

In 2011, my hours were cut to 30 per week, a loss of 10% in pay, Sept 2012, those hours were cut in half to 15 per week, 50% loss in pay.

I AM grateful to have the 15 hours per week, SO GRATEFUL, and we have cut expenses to the bone.  If this disability doesn't come through, I don't know what we'll do.  So, if anyone buys a new fridge, save the box for us, k?

Kthanks

The Times They are A-changin'

As I sit here filling out LTD paperwork, it occurred to me that I haven't written anything here lately.  I guess it brought to mind that I should really be keeping up with my day to day ups & downs on a more consistent basis.  Can I just say, Thank God for spell check.  These couple of sentences would be un-readable if not for spell check.  And, if I use a word that makes no sense- that's just how my brain is working these days.

The Big Change- as of Sept 1, 2012, I will be working strictly part time (15 hours per week) and from home.  My clients have all been reassigned to other Account Managers because am making more and more mistakes every day.  In the Insurance Business- that is NOT acceptable.  I understand that- it is hurting my pride, I'd be lying if I say it wasn't, but it's also a relief that they have been moved to people I know will take care of them.

Hoping and praying that the LTD coverage kicks in- we have an old school plan that should pick up when income is lost.  Only a %, but that's more than nothing.

The Accounting part?  No problems- our software makes it easy- I actually have no problems doing math in my head- but ask me who Martin Luther King, Jr is- and I draw a huge blank.  That actually happened during my NeuroPsych testing last week.  And, it's happened with insurance coverage questions- this knowledge having been in my brain for going on 30 years.  It's very frustrating, but I'm slowly coming to terms with it.

My Neurologist is also changing my medication.  Depending on all the tests I have to have done to make sure I'll be OK taking it.  Kinda scary- but, the Copaxone is not working.  New lesions after every MRI since my first in Nov 2009.  EKG done- all is good there- now just have to wait on blood tests for some virus- I think the chicken pox virus- and have my 'macula' in my eyes- whatever that is tested on Thursday.  The most scary part....when I take the first dose- I ahve to be monitored for 6 hours to make sure my heart rate doesn't go too low.  I figure, if it's my time, it's my time.  IT is what IT is.  That's been my mantra the past few weeks.

I'm not even going into the pay cut- I'm truly freaking out over that.  I'm a pretty budget minded person, but cutting my pay in HALF- dang.  And, benefits- down the drain.  That's all I can say- but, it will work out- it surely will.

I'm completely aware that I could have NO job- and be alot worse physically- and I'm trying to remember that.  I really am.

And, that's all I have to say about that.

Ear/Jaw Pain- Had NO Idea this could be.....

MS related...been treated several times over the last year for ear infections/swimmer's ear and advised that any jaw pain was likely rooted in the ear infection....I'll be talking to my Neurologist about this in July.  

Trigeminal neuralgia has to be one of the worst symptoms that people with multiple sclerosis(MS) experience. A couple of readers have written to me about this symptom and said that there were no words to describe the intensity of their pain. It is one of the types of pain described as “neurogenic pain” or “primary pain,” meaning it is the direct result of the disease process of multiple sclerosis, caused by demyelination and lesions on specific nerves.

What Does It Feel Like?

Trigeminal neuralgia, often called tic doloureux (French for “painful twitch”), is perhaps the most intensely painful MS-related symptom. It can be described most commonly as:

• occurring in the lower part of the face (often triggered by chewing, drinking or brushing one’s teeth)
• intense, sharp pain
• like an electrical jolt
• usually the most intense pain is short-lived (from a few seconds to up to two minutes), but can result in a more constant burning or aching

However, it should be noted that it can also have the following characteristics:

• extending as far as the ear, and often mistaken for the pain of an ear infection
• can be triggered by loud sounds

How Common Is It?

Trigeminal neuralgia is fairly rare, with only 4% of people with MS experiencing this kind of pain. However, people with MS are 400 times more likely than the general population to have an episode of trigeminal neuralgia.

What Causes It?

Trigeminal neuralgia pain can be brought on by chewing or touch. It is caused by lesions on the trigeminal nerve, which is also called the fifth cranial nerve. (The 12 cranial nerves emerge directly from the brain instead of from the spinal cord.) The trigeminal nerve controls the muscles needed for chewing, and is responsible for most facial sensation.

How Severe Can It Get?

Trigeminal neuralgia can get so severe and so distressing that it can require hospitalization and intravenous painkillers. It can interfere with a person’s intake of food and fluids and require that these also be supplemented intravenously. Some people may require surgery for this symptom. However, it is rare that it ever gets this severe.

Due to the intensity of this symptom, anxiety and fear about the possibility of it recurring can cause unnecessary suffering and interfere with daily life, even when the symptom is not present.

Additional Points/Information

Tends To Be Episodic: Each “bout” with trigeminal neuralgia usually lasts a couple of weeks. However, this symptom tends to recur and can happen as often as every couple of months. Some people will go years between episodes of this symptom. Unfortunately, as time passes, time between episodes gets shorter.

Hold Off On the Root Canals: Given the location and nature of the pain associated with trigeminal neuralgia, it is often mistaken for dental pain. This could lead to unnecessary (and irreversible) procedures like tooth extractions, root canals and even procedures to reposition the jaw. Make sure that you see your neurologist if you are experiencing this kind of pain,especially before undergoing any kind of drastic dental work.

Appears Early: Trigeminal neuralgia tends to be one of the first symptoms of multiple sclerosis for those who experience it.

Like Forrest Gump

In the near future, I WILL be able to call myself 'a runner'.  Started training this morning.  Have I lost my entire mind?  Nope.  I'm not doing this to lose weight, I'm not doing this to win any medals, I'm doing this for my health. Mainly,  I'm doing this to kick some MS ASS!

I've always made the statement that if you see me running, someone MUST be chasing me.  The only thing chasing me now is my fear of failure.  And, I WILL out run that!

I honestly wasn't going to write or post anything about this for a couple of weeks.  But, the one thing about putting something 'out there' is the fact that you (well, at least me), have some culpability.

I'm certain that this will reduce my fatigue, increase my balance, and make me feel like a million bucks!

Stay tuned.....

I Would LOVE Some Cheese with my Whine

Feel as if that's all I do is whine.  Gotta stop it.  Gotta stop putting it 'out there'.  So, I'm gonna.

My groom actually got home earlier than usual last night, but guess what?  I was yawning and my eyes were closing without my control.  But, I DID get a few minutes with him.  That's a good thing.

It really is the little things.

Just a Little "Normal" Would Go a Long Way

I am proud that I got my action items completed yesterday.  Left work, went home, clipped coupons, went to the gym, did cardio for 25 minutes- didn't want to push myself, went to Walmart, came home, showered, made lasagna, and then I was DONE with a capital FATIGUE.

I would love to sit down to dinner not alone.  I didn't even feel like eating last night.  Probably a good thing since I've put on 11 lbs of the 30 I had lost total.  I am BACK on the WW wagon- I have GOT to get rid of that 11, and 15 more.

I am making a list of things to do as soon as I get home from the gym each day- to keep myself from immediately donning my jammies and laying down on the sofa or in bed.  Even though that's about all the energy I have to do- I MUST push through this.

2012 MS Walk is this weekend.  I'm so excited!  I'm very proud of the funds I've raised (begged for) for the cause!  And, it's always a blast getting a ton of friends together.  I'm just praying that the horrible fatigue doesn't hit me.  Think I'll take it easy on myself a bit this week, at least.

Moody Go Round

I suppose I need to see a gynecologist soon- I've been very lax about seeing one- I don't have a uterus any more- so, really?  Why bother?  I see so many freakin' doctors as it is.  But, I need some help.  And, that's hard for me to admit.  Just read this: I've bolded what really hit me between the eyes.  And, there are tons of articles about MS & mood swings- so I've got the double whammy going on...and I've got to do something before I just do something I will regret...or say something, or whatever....Gotta get a grip- and it's obvious I can't do it on my own which really chaps my a$$.

Mood swings and irritability are closely related. We use “mood swing” to describe a reaction that isn’t appropriate to what triggered it. “Irritability” to most of us means an angry or impatient reaction to something that happens.

What causes mood swings and irritability? In both cases, the physiology is based on hormonal imbalance. The underlying cause may be fatigue — and if you’re having hot flashes or insomnia, you are very fatigued! But it can also be the sudden shifts in hormonal balance so characteristic of perimenopause, especially when your body doesn’t have enough support to maintain its natural balance.

Mood swings and irritability have an emotional aspect as well. Perimenopause is a time when many women find their true voices. That’s a good and natural process. You may note the resurfacing of old emotional issues that remain unresolved. This work is important, not just to relieve your mood swings, but for your very health.

Women often come to us saying, “I thought I was losing my mind!” because they’re shocked by their mood swings and irritability. For them it’s a relief to know that their moods have a physical basis and can be relieved. There’s usually nothing wrong with you that you can’t fix by taking better care of yourself.