Multiple Sclerosis Blog

I must say that for me fatigue is the most debilitating part of having Multiple Sclerosis, and the fatigue is hitting me hard.

I have absolutely no stamina for anything.  Even 400mg of Provigil doesn’t help.

I do have amphetamines to fall back on, but they don’t really give my body energy like the Provigil did in the beginning.  They just make me feel really “speedy” on the inside.  - Not a feeling I like.

At first I didn’t plan on blogging about this horrible tragedy for 2 reasons;

1. Hasn’t everyone had enough of this? The victims - countless. The shooter “glorified.”

2. This is a very personal subject for me.

It is actually the latter that eventually prompted me to write about what I honestly feel is an epidemic in our nation.

So, please let me start by offering my prayers and condolensces to all of those affected by this tragedy and all others before it similar in kind. My condolensces also go out to anyone who was ever affected by depression, suicide, or homicide.

And that is the purpose of my bringing up this topic.

The state of the mental health care system in this country.

I make absolutely no claim that I am an authority on this, but to me it seems plain commen sense.

I have never heard of anyone who hurt themselves or others that didn’t have “a long history of mental illness.”

Depression and Multiple Sclerosis almost go hand in hand, and the lack of treatment for mental health from the get go is poor at best.

Long gone are the days of spending a few weeks in a mental hospital with intense therapy. The time has past when Doctor’s released a patient only when mentally stable. The patient was then followed up with intense outpatient therapy, gradually getting better, or at least maintained.

Nowadays, it is usually your primary care physician who prescribes any medication. In addition, it is a LONG road from depression to suicide. Unfortunately the line between suicide and homicide is a VERY fine one.

I never understood suicide until I went down an 11 month path downhill. Often times, MS can seem hopeless, and that is exactly what a suicidal thought feeds on, and once fed, it grows like a weed.

Nine months ago, my Oncologist had me committed against my will to a local ER that takes mental patients. They used to have 3 nice hospitals in my area, but they have all closed.

Though my brief, 11 hour stay was one I would love to erase from my memory, I was lucky. I got in touch with a terrific therapist. But you must understand that I fought hard against the suicidal feelings. I was lucky that there was an iota of “me” left, and that I actually pursued the help offered at that point - most don’t make it.

Nine months later, after intense therapy as well as medication, it is still hard for me to get through each day.

Hands down, this is the HARDEST obstacle I have had to overcome.

The day after the VA Tech shootings, I said the same thing to my friend. There were too many signs. NO ONE just wakes up one day and hurts himself or others. It is truly an illness in and of itself.

It appals me how the science of Psychiatry/Psycology has seemed to deteriorate over the past 15 years rather than move foward as we have in other areas of science.

If, G-d forbid you were diagnosed with a brain tumor and the doctor said, “Here’s some medication. Take it and come back in 6 months. In fact, here is a one month supply of free samples!” Would that be acceptable to you or anyone who loves you?

There has been all the (geez, I can’t believe I’m about to say this…) “normal” controversy over this tragedy. Guns? Who should have them, be allowed to carry them, etc. Did the University do the right thing that morning?

I don’t know. But what I do know is that we won’t ever lose our right to bear aqrms in this country - whether or not you agree. This is a free country, and though we might not agree with all freedoms, if we enjoy other liberties, we oftentimes have to tolerate others. So, for me the whole gun thing is a waste of good breathe.

Mental illness on the other hand is something that, unfortunately, most of us will have to deal with in one way or another - be it within our own minds or by way of someone we love.

It is sad, unfortunate and needless, and it can be changed. Please G-d let this be the last time a tragedy of this nature occurs. Think of all the lost potential of those murdered. Maybe one of them could have found a cure for MS or any other plague. Is that enough for you to scream?

Think about the shooter and the torturous hell that this brilliant young man had to live with for so long. Too long, and too late.

You can’t escape your mind. It is sad, and I do have just as much pity for him as I do the other victims.

I don’t in anyway agree or support his actions, but I do understand. I understand because I was “there” in my own head, and it was nothing less than torture. My outrage is toward the degregation of our mental health system. Want to blame someone? Blame the doctors he saw.

Q: Do I have to tell a potential employer that I have Multiple Sclerosis?

A: No.  But should you?

You absolutely do not have to tell a potential employer about your medical condition, but oddly enough, in my opinion, you should.  Though it will more than likely take you longer to find an employer, if you are honest, then you can start your new job with confidence.

Both you and your new employer will both know upfront how best to meet each other’s needs, and that kind of relationship with a boss is one that most “average healthy” workers would envy.

Q:  Is it illegal for someone to deny me employment based on a disability?

A:  Yes.  But, good luck pursuing anything legally.  However, if you are employed and feel that you are discriminated against, seek legal advice!

Recently, on the MSSF forums, there has been a lot of discussion regarding employment and all the lovely things associated with it.  It is definitely an issue.  Quite frankly, I am surprised at myself for not thinking of it myself as my background is in HR!

There are so many facets to this topis that it is impossible to cover it all under one post.

Welcome my new category…  MS and Employment!

At least, I think it’s Friday.  I am quite upset today.  I just can’t seem to escape having MS.

My day started with my friend calling to say that she and her daughters were going to the zoo. She heard the disappointment in my voice, and she asked if I’d like to go…

Ummm…. yeah I’d love to go, but umm… I CAN”T!!!

My husband called to make sure we were all up, and I told him.  He offered to take us this weekend.  He didn’t get it, bless his heart.

I gently explained that not seeing monkies throw poo was not the point.  The zoo is where all the mommies congregate so that they don’t go nuts and/or drive their husband’s crazy.

He got it.  But what he doesn’t get, or anyone else for that matter is that I can’t just forget and move on at this point.  I am Secondary Progressive.  It’s not like when I was Relapse Remitting.

For example, we were watching some home videos, I was behing the camera, and at least 3 people asked me how I was doing.

Don’t get me wrong, they are well intentioned.

But the inflection in their voice when they ask about my wellbeing has changed.  It is one of pity now, not a “nice to see you” approach.

Here I am, trying to get my chidren’s preformance on tape, and all we keep hearing on the video is, “how are you?”  I have to answer.  So I say, “Fine thanks!”  All the while trying to sound upbeat.

But I’m NOT fine!  I do know they mean well, but sometimes I just want to and need to forget.

I missed my neuro appointment.  I see my oncologist on the 11th.

The stress of my disability is really taking a toll on the whole family, and I am quite concerned.

My poor hubby is overworked at his job as well as at home.  One of the hardest parts of living with MS for me is that I can’t be and do the things I want to…

My injection sites were horrible.  I have a pretty high tolerance for pain as i’m sue most people living with chronic illness do.  But the sites were not going away and keeping me up at night.  It felt like I was being repeatedly stabbed with needles.

I called Shared Solutions and spoke to a nurse.  She told me to heat the injection site for 5 minutes, then self inject, don’t ice, but put pressure on the site for exactly two minutes.

This helped SO much! The nurse explained that when you self-inject, you can go in at a 45 degree angle whereas with the AutoJect, it’s has to be a 90 degree angle.

I find that I have a lot more control over the injection doing it myself.  The nurse also rcommended that I massage the site 48 hours after, and NOT BEFORE!

Also, she was adament about not icing the site after. 

I personally have found that this has helped practically eliminate the injection site reactions, and made Copaxone a much more tolerable treatment for my MS.  Thank you to the Shared Solutions Nurses!

So, last Thursday I went for a Brain and Spinal Scan with and without contrast.

An MRI with and without contrast basically means that they take the MRI pics, inject a dye in your vein - (not painful, but you get a slight metallic taste in your mouth) - and then they take more pictures.

My Neurologist wanted to take both an MRI of my brain and my spine.

I should have started to wonder when everyone I spoke to about scheduling the MRI’s said, “Are you SURE you want to schedule BOTH at the same time?!”

Well, of course I did… Why come back twice? I’ve had a ton of MRI’s, so by now, it’s almost a nice little vacation from my 2 little one’s! They did tell me that I would be in the MRI for a while, but really, how long could it take?

I would highly recommend to anyone that has to do both that they schedule them separately! It was a terribly long time. It wasn’t the “tube” that bugged, but you have to lie perfectly still the WHOLE time, and the spine takes the longest.

By the time it was over, I literallly was crippled from the pain. My left leg was completely gone, and I had horrible flashbacks of when I lost my legs the last time.

I sat there for 20 minutes praying for my leg to come back.

It did, though not completely, but enough to get me out of there and to pick up my kids. It was really scary, and unfortunately, by Sunday, I had lost my left leg completely, and I am now using the electric wheelchair in the house. I can’t even “wall walk.”

I have been progressing for some time now, and just saw my neurologist a couple of weeks ago- hence the new set of MRI’s.

The stinky part is that my neuro can’t do anything for me. Because I am on chemo among countless other drugs, my immune system can’t handle steroids. Nonetheless, I am seing him tomorrow morning for my poor left leg as well as something weird in my arm.

I had a pulse of chemo on February 16, and now, the veins in my left arm are bulging, hard, and painful.

I called my Oncologist, and their first concern was a blood clot. More good news! Yesterday, they did a doppler, or ultrasound, and, no clot! Next was an appointment with a Physician’s Assistant as my Oncologist is out of town.

I’ve been running a fever, and my blood counts are crap because of the chemo. Therefore, he didn’t feel comfortable prescribing an antibiotic as it would drive down my blood counts even further.

As far as my veins, they are done - at least in my left arm. Apparently, this sort of thing happens from either overuse of the veins, a reaction to the actual chemo, or, in my case probably, both.

The PA knew that I was seeing my neurologist tomorrow, so he sort of “passed the buck.” But my neurologist treats my MS. He treats it well, but he’s a neurologist. He won’t even give me steroids in fear of my blood counts let alone an antibiotic. I do have a follow up with my Oncologist on April 11. Until then, the PA told me to take 600mg of Motrin 3 times a day for my arm. I suppose if he felt I would become septic he wouldn’t have sent me home! HA!

Thank you!  Thank You! Thank you!

The MS Mobility Foundation recieved a very generouos donation of $750 specifically for the fee required by the IRS  for tax exemption!  A BIG FAT THANK YOU - you are angels, and you know who you are!

That brings us one BIG step closer to being able to award money.  We are currently looking for a donation of $3,000.  This money will be used to puchase brochures that we will mail to Neurologists that focus on treating MS.

This will not only get more donors for awards, but it will advertise our website and give support for so many that need this priceless service. 

Please know that we are a completely volunteer non-profit, and every bit of help is needed.

Thanks in advance for considering us for your charitable contributions!

My my, it has been a while.  Unfortunately, I wasn’t doing well emotionally or physically.  I promise to write more on that another time.

I just had to check out for a bit…  But not permanently!

I started to progress, and my symptoms have gotten worse.

What I thought was a cure turned out to be just a treatment.  A viable treatment, but just a treatment nonetheless.  It blew the wind out of my sails to say the least.

In addition, we had some renovations done on the house, and I am still recovering.  I just had an MRI of my brain and spine last Thursday, we will see.  For now, I am sticking with my “viable treatment for MS” as my terrific neuro put it.