Tuesday, January 20, 2009


I have been corrected by 2 people that I don't know....that I am misinformed about Tysabri.  Apparrently, I was confused about who has died and who was just given the "fatal" news that they have PML...
Honestly, I am pissed that anyone that I do not know-would give a shit about what I think about Tysabri.  This is the opinion of a person who has been through more shit in the last 2 years than most people go through in a lifetime.  My opinion was not solely formed from reading "misinformation" on the internet- it comes from being raped by the infusion center at $430.00 a month.  It comes from having to have my husband take a day off from work so that I can get my infusion, and then come home and sleep because I feel like hell.  It comes from no doctors caring about the other symptoms that I have, but feeling free to have a license plate that says "CRISIS" on their Porsche.  I am tired of sitting on hold with drug companies- begging to get help with all of my copays, and always being told no.  I spend hours every week looking for solutions...DRUG COMPANIES hold my family by the balls! And I am sick of it.  I am sick of choosing between getting my medication or getting my kids new shoes.  I am sick of all of the stress and worry that Tysabri has put on my family.
Doctors "practice" medicine.... so you dopes that have been brainwashed by your doctors and drug companies need to remember that even though the statistics on Tysabri say there is a less than 1% chance of getting PML and/or dying- I am going to make sure that I dont get hit by that Tysabri bus, and get off at this stop.
People that do not know me personally- do not leave shitty comments.  You may leave your little =) at the end of your bullshit comment on someone else's horrible story of their life.  
Honestly, I cannot comprehend why a person with MS would be such a jerk to someone else with MS. Hope you both find someone else to harass.

Monday, January 19, 2009


I have been in an odd place lately. I cannot seem to manage everything that is currently going on with us.  Terry was laid off for a few weeks, and of course, as luck would have it- he did not qualify for unemployment because the holidays that were paid.  I am starting to NOT like his employer.  We thought everything was so  great with Terry being promoted to lead position in the department he is in.  Actually, I think it has made the stress for him a lot worse.

I have decided to stop taking Tysabri, my MS medication.  Another person has come down with the deadly brain infection- and she died within days of finding out that she had PML.  PML symptoms are almost exactly like MS symptoms.  It makes it really hard to know if you are having new symptoms of MS or if you are actually falling victim to PML- the only way to know is to have an MRI. Well, my insurance will only pay for an MRI 2 times a year, even though it is vital to making sure that I am healthy. This woman dying was not the only reason that I decided to stop taking Tysabri- The copay (which is 20% of the cost) that I am billed per month- is over $430.00, and it changes from month to month.  The company that makes Tysabri called me last week to offer me a "COMPLIMENTARY INFUSION" which I had to laugh at. I think it is crazy! Why can't they offer it at a lower price? Or make sure that I am not going to die from PML?

I have been diagnosed with something new- pernicious anemia.  For this I will have to give my self shots for the rest of my life, which does not bother me since I have to for my MS treatments anyway.  I was watching MYSTERY DIAGNOSIS on Discovery Health Channel the other night.  I saw that a woman was having the same symptoms that I have had, but she has been suffering for over 15 years.  She found a doctor that listened to all of her concerns, and had an idea of what she was suffering from.  So I found a new doctor, armed with my medical records, medications, and story about how I saw Mystery Diagnosis.  My new doctor is named Lola- which I love.  She was immediately interested in my symptoms and said that she would run the test.  2 days later my hunch was confirmed- my vitamin B12 level was untraceable.  I immediately picked up my Rx and I am hoping that I feel better soon.  I have learned that a vitamin B12 deficiency can lead to MS symptoms becoming worse.

So not only does heat, stress, walking, and fatigue make me feel worse- but my own body is making me feel worse. How do you like them apples?
So I am now armed with more info on my body than more people will ever know- but Dr. Lola also told me that I am going to be a candidate for a surgery- that will make my life so much easier! I will spare you the details, but i am sooooo looking forward to this surgery- I will meet the surgeon this week.  I had my tubes tied when Cooper was born, so that was my last surgery.  I am hoping it does not send my body into an uproar...the stress of "healing".  I kinda don't care though.

I am homesick for Illinois, beyond words. I wish that my BFF Stephanie lived closer- I miss her so much.  I am so happy about Facebook, being in  touch with Kathie, Jill, Katie, Nicole, Tiffany- makes my heart happy.  I am so lucky to have a new friend that I met on my own!! Lindsey lives in the same town that we do.  I responded to a craigslist ad she had requesting donations for a non-profit she is starting. We became friends instantly, faster than fast.  I help her - she helps me... and the best part is that we have never met in person! We are online and phone buddies.  Her sweet husband came over today to pick something up and drop something off - so I have met her hubby, but not Lindsey.  It just has not worked out yet for she and I to meet, but I hope that we can get together this weekend.  Living out here, has made me a little more resourceful! I am proud to say that I am figuring out new ways to met people.  With amazing results too! =)

My time is up tonight, sleeping pills have gotten the best of my attention span.  I am hoping to be more current on this blog...but school is back in session for me- so don't anyone hold your breathe!! NOT THAT ANYONE EVEN READS THIS!

be good.
p.s. did I mention that I am thrilled that Obama is in office as of tomorrow! I have placed my bumper sticker on my car... "THIS ONE VOTED FOR THAT ONE"