Buzzing and Tingling all day.

I have slept more than anyone else in my house for the last two days.  I cannot begin to understand why my body is acting up, kinda wondering what is making my symptoms worse...most likely stress.  My legs and feet are buzzing, my hands are tingling.  I have been a total klutz today.  I am just struggling.  I wish I could find a way to make it better.  

I am a bit accident prone.  Tonight I was walking with some neighbors to the pond behind our house.  The kids were throwing some bread in the water for the geese.  I bent over to pick up a little bread that my son dropped.  Apparently, I was a little too close to the edge of the pond- because my neighbor and my husband started yelling at me to get away from the edge of the water! I did not fall- but I can feel how nervous people are around me.  Kinda funny.

Then we get back in the house- my hubby makes us some salads for dinner.  I crawl up under a blanket, perched in my spot on the couch- Terry placed the plate on my lap.  I promptly drop the bowl and its contents all over the carpet- salad and ginger dressing everywhere.  Earlier today I dropped a drink that landed on the kitchen floor.  My husband politely whispers "No TRUST!"  He says that to the kids all the time when they are doing something that looks a little dangerous.  I know he trusts me - he just is always prepared to clean up the mess, reluctantly.

We went on a brief walk with some neighbors tonight- I really enjoy their company.  We get along great- and our kids really like eachother.  The only thing that is hard =) is that they are Packers fans.  Since I am a blue blooded BEARS fan- it might take me to do some soul searching to get past our NFL differences- BUT I really like them.  

I am excited to do an Easter egg hunt with our kids! We are planning on staying at home to celebrate Easter.  I am a little excited and proud of my husband that he turned his mothers invitation down.  We need to start our own family traditions with our kids.  I feel good about that.

I try to stay more current on my postings.  I am hoping to stay awake a little more often =)

be good

Lay off

So today begins a lay-off for my husband.  He is walking out of work this evening, and someone stops him in the hall to tell him that they are going to make some big changes in the next two weeks.  This comes the day after their biggest account dropped them. So we are really nervous about what is to come.  I am going to try to keep my head up- but it might be hard to keep Terry feeling positive.  

He is worried about not being able to afford the mortgage, the bills, and all my medications.  I wish that I could do something! It is really going to be tough.

be good

March

I am so happy that spring is beginning to arrive.  I always think it is funny how I get my hopes up mid March, and then we get a few inches of snow to remind me that I must suffer winter for a few more weeks. 

Today we got 7 inches, and it was that heavy snow that really sucks to shovel...luckily, it got rained on immediately.  We are supposed to get more snow throughout the week.  But the birds are out and the buds are starting to show on the trees.

I started back on Rebif about 5 weeks ago.  I have begun the full dose after the first month of the titration pack.  I have been suffering through the flu like symptoms.  The fever and chills I can handle.  But the constant aches and pains are what are really knocking me down.  I have been taking naps for the last few days- I am not sure if it is meds, MS, maybe a virus? I am pretty sick of having MS- my symptoms are all flared up and it makes it really hard to carry on a "normal" life.  I am so tired everyday.  I am cancelling plans and appointments.  I have had to even call my daughter out from pre-school cuz I am too tired to get her there.  

My husband applied for a new job.  He has had 2 interviews at the company in the last 2 weeks.  I am really feeling hopeful about it.  He really deserves it.

I had a friend that passed away 8 years ago today.  Mr. Charlie Dauphin.  What a sweet guy you were... I think about you and always smile.

Alright, that is all from me.  MUST GO TO BED.

be good 

new neurologist, new outlook

I went to a new neurologist today. A woman.  I am of the opinion, that men just do not understand what a woman's body must go through during the course of her life.  I met this wonderful woman today, that was friendlier than any other doctor I have ever met.  She showed me pictures of her dogs, we talked about purses and clothes...and then dove into talking about my MS.

She asked me about my overall health- I told her about my upcoming surgery.  I also told her about my B12 deficiency.  She first seemed to pay no mind to the B12 thing- but when she asked me what my levels of B12 were...I told her, and she put her pen down and looked at me right in the eye and said, "Are  you serious?"  My B12 levels were so low that she beleives that my MS symptoms were made worse by it.  She thinks with continuing my shots of B12 - my buzzing and tingling will (hopefully) continue to improve.  

We discussed the fact that I cannot afford taking Tysabri- she had a simple solution.  She told me that I cannot afford to be walking around "unprotected" from my MS getting worse.  She said that we are going to try Rebif again,and God willing we will notice that it will work this time!

I am doing all the things I should, working out, stretching, eating good foods, and trying to get more sleep. In the last week, I have lost 4 pounds and been able to run 1/2 mile...which both a remarkable for me.

Walking is difficult because I have really altered sensations in my feet (and hands).  The doctor observed that my walking is, in her words "JUNKY".  I hope that it can get better.  I walk with a cane- it helps me to make sure that I am careful and not tripping on everything around me- flat and smooth surfaces included. =)

I am excited to be seeing a new doctor.  I am excited to be on a new drug.  I am feeling proud of myself that I continue to stand up for myself. Since no one else will.

be good. 

and happy First Birthday Emma Jade Losser!  Auntie Kimmy loves you!  

correction

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.

Meltdown

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"

mud puddle mind

My MS is bothering me a lot today.  My hands feel like they are going to buzz right off my arms. My brain is like a big old mud puddle, I can think clearly.  I have so many things to get done and I cannot prioritize any of it.  I need to change a diaper, but I get distracted by the laundry. I need to make that phone call to the doctor, but I get caught up with playing on the computer.  I need to do some homework, but I just cannot stay awake long enough.  I have a husband, but since he works outside of the house, he gets to come home and fall asleep....and sleep until he goes to work in the morning. Seriously, I think he has narcalepsy or something.  He has been asleep since 545PM and it is going on 1030PM. He will not wake to help me bathe the kids, put them to sleep, do the dishes, take the garbage out, nothing.  It really pisses me off.  I mean, I work hard all day long too, but since I do not make a paycheck, I don't have the right to take a nap. I am really mad at him.

You would think that your husband would come home and play with the kids so that you could have some time "off"...but Terry said to me tonight, when I asked him for some help, "I have not sat down at all today."  Oh, well, please sit, sit until you are totally refreshed honey.  I will continue doing everything, even though I cannot feel my fingers or my feet.  Even though I need to take Ritalin to stay a wake. Even though I asked you to pick up my medicine at the drugstore on your way home, and you forgot.  

I did do something funny today- my brother emailed me this link to make me laugh, which it did.   www.yearbookyourself.com  

Hilarious isn't it? Actually, not too far from the truth - back in 1994 I had some bangs and they were BIG!

I am done, I am gonna watch the rest of Freaks and Geeks, take some Trazadone.

be good