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Archive for the 'MS & The Bizzare!' Category

Virginia Tech and MS?

Thursday, April 26th, 2007

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.


MRI’s & My Leg

Wednesday, March 28th, 2007

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!

Rigors? ADR? (Adverse Drug Reaction)

Monday, November 6th, 2006

Saturday night, about an hour after I took my shot, I started to get really cold.  I took my temperature, and it was 97.0.   I got into some warmer P.J.’s, and by the time I got back to the kitchen table, i was shivering and shaking.

The shaking quickly turned into convulsions.  The muscles behind my shoulders and up the sides of my neck cantracted, and the pain was excrutiating.

The soles of my feet and the palms of my hands got pins and needles and then went numb.  Next was my face.  I had trouble breathing, like my throat was being strangled.

After 15 minutes of this episode being severe, my husband called 911.  I though I was having a seizure, though I know little about them.  By the time EMS arrived, it was starting to subside.  My pulse was 165, my blood pressure was 94/52.  They stayed as I described the experience, and by the time I was through, I was fine.  My pulse was 96, and blood pressure 104/67 - I am always 110/70.

I decided to opt out of an ER visit at 11:00 pm on a Saturday night.

After speaking to my I.C.U. nurese friend and my neuro, it was one of two things.  Rigors or , I nicked a vein when I gave myself the shot.

Either way, it was what they call an Adverse Drug Reaction or ADR.  It’s not an allergic reaction - apparently there’s a difference.  

But that’s great news because it means I can stay on Copaxone!

My neuro is giving me an anti-hystemine to “pre-medicate” - take the pill before the shot, and hopefully it will prevent it from happening again!

Injection Site Reactions

Monday, October 23rd, 2006

I am on Copaxone, and the injection sites are horrible.  I tried using hydrocortisone cream - prescription strength, essential oils, icing it - it does help immediately after the injection.

 I also heat the injection spot 5-10 minutes with the Herbal Heating Pad from www.bathandbodyplace.com , and the Healing Balm is the only thing that soothes the injection site.

I know I am plugging the site admittedly for the Multple Sclerosis Mobiliy Foundation , but these products have honestly been helpful to me for years, even when I was on Betaseron.

My husband and I are donating 100% of ALL profits from the site  to the MSMF.  We are determined to make people mobile.

We guarantee all products, and the Organza Gift Sets are the perfect gift for EVERYONE.  Plus, you are supporting a good cause too!  Please check it out! www.bathandbodyplace.com Thanks!