Wednesday, September 22, 2010

Big week

It's been a while. I am not going to make any excuses. I am sure you can figure it out...
I am just about to start Novantrone- a chemotherapy drug that is used for multiple sclerosis. After having tried all the drugs- Avonex, Copaxone, Betaseron, and Rebif- then going on to we are about to begin Novantrone.
My good friend Maria introduced me (via email) to a good friend of hers that also went through chemo to help her MS. Kathy is 2 years past chemo and doing great! So that gives me high hopes. I follow her blog
I have been enjoying the hell out of my summer- I traveled quite a bit! I went to Chicago to visit my parents for a week. I went to LA to surprise my brother on his 40th bday! Then my whole family went to Colorado for a family reunion! I felt really great while I traveled! When we got home from all the traveling- I started to experience some problems with really heavy legs, blurry vision, blahblahblah.
I am super happy to move on with treatments! I just want to fight this MS with everything that I have got!
Tomorrow is 11 years of sobriety for me! That in itself is reason to be thankful! Thankful for all of the support that I have in my life!
2 days until I am going in for the first dose of chemo! I am not looking forward to the side effects, but willing to go through them if it helps me with my MS.

be good!

Saturday, January 2, 2010

Scentsy is my new thing!! I love the product so much that I have become an independent consultant. My website is

Happy 2010

I have so much to be happy for this year- last week I finally was awarded social security disability! I felt shock, relief, happiness, shock, and total shock. I have been working since I was 14- and always in a hair salon! That is all I know! I went through the nerve wracking hearing in front of a disability judge... and it was nerve wracking! I was really hopeful- but pretty sure that I would get denied again. I was shocked last week to get my papers that said I was awarded
what I had been so patient for!
This will give my family a lot more flexibility. I am not counting my chickens before they are hatched- but having a steady income from my side of the maraige- will be so helpful! We depended on the two of us making ends meet for years- and then MS hits our family like a hailstorm and we are down to one income and TONS more medical expenses.
SUPER THRILLED about 2010! I have 3 wonderful children and a great husband that would do just about anything for me- I have so many wonderfully supportive friends! I am one lucky girl!
I got to spend Christmas with my family in Chicago- and that was great to be there!
We are moving forward and hoping that 2010 is going to be a new beginning for us!

On another exciting note- I am now a Independent Consultant for SCENTSY! I am so excited about it! I love all the SCENTSY warmers and fragrances! I even have my own little website where you can check out the catalog and order
HAPPY 2010 !
be good!

Monday, December 7, 2009

When will I be able to breathe?

It has been a crazy last few months... My mom has had to undergo a couple of surgeries in the last month. She is a pretty healthy 62 year old tough broad- seriously. She has hydrocephalus. She has WAY WAY too much spinal fluid through her brain and it was causing many many problems. She had a shunt put in her brain back in 2001 - and it worked just fine. The last 6 months she started having problems again. They went to a new neurologist - and discovered that the old shunt had quit working. Since they had come a long way with technology- they were able to put in a new shunt that could adjust the flow of the spinal fluid by waving magnets over the head- I guess they can use this same technology in pacemakers as well.
Anyway, Nov 2- my mom had this surgery- my brother and I both came to be with her in Illinois for her surgery. My bro came from LA- and I came from MN (by myself with 3 kids under the age of 6)(8 hour drive).
We got there the day before the surgery- and I shaved my moms head for her- as she wished. We had a little fun with it- making her have a mohawk! She has a great sense of humor about everything. The next morning was the surgery. Everything went well - or at least that is what we thought.
While the month went on- my mom seemed to continue being in pain and not feeling well. She developed a pouch on her stomach - that the doctor decided was a hernia. Her stomach has the task of digesting the extra spinal fluid through the drain that runs from her brain into her tummy. So we went along with 2 different doctors opinions- that she had a hernia.
Fast forward to Friday night (12-4)... I get home from working about 10 pm - I walk in the house and my daughter says, "What is this about 'Grandma with the no hair' getting cut open again? I respond- "Oh, honey Grandma has a hernia- which is just a little problem that the doctor can fix with a simple surgery." It left me wondering why that was the first thing on her mind when I came home. Seconds later, my husband says, "okay, don't freak out. Your dad just called and your mom just had to have some emergency surgery."
I immediately start to panic, I knew something was wrong- I had been trying to get in touch with my parents all evening while I was working- I left messages- no returned calls- which is not like them to not be in touch. I grab the phone and I start trying to call my dad- he is not answering. I call my brother- also not answering. I call my sis-in-law, and she has the same info that I have-
my mom was home alone and feeling like the hernia was going to burst- she went to take off her clothes to get more comfortable- and suddenly, there is a pee-stream of fluid coming from her incision (that should have been completely healed by now). Her skin had stretched so much that the fluid was coming out of her pores like a pee-stream. So she called a doctor- and was told to get to the Urgent Care or ER. She drives to the Urgent Care, doctor there asks what her concern is- mom tells him, "there is a pee-stream of fluid coming from my hernia"- he acted like she was exaggerating. She pulled up her shirt to reveal the craziness- and he starts calling people to get an ambulance!!
They all have no idea what could be happening to her- so they want her to be rushed by ambulance 1 hour away to the hospital that she had the surgery at. The doctor preforms this surgery to see what the hell happened- and the tube that is supposed to be IN her stomach- is actually between her stomach and her skin- so NOT a hernia! More like HUGE medical mistake!!!!!!!
So surgery takes like 5 hours.......she is feeling better- but they are not letting her out of the hospital yet because they are so worried about infection. ( umm, cuz spinal fluid is not supposed to be leaking into your body! Yeah thanks doc!)And, I am sure the hospital and doctor are a bit concerned that they will be getting sued!
So she is feeling better- but they are not releasing her- which makes me wonder if I should be going down there to help- are things worse than I am being told???
All this is happening, with work, the holidays, my recent flare-up that landed me in the hospital- it is all a lot to take in.
I have my disability hearing in less than 2 weeks - for which I should be extactic! But I am nervous! My doctor has put me on a plan of NOT working anymore than 8 hours a week! So that is not even worth driving 20 miles to get to work!
okay- my therapy is done! done bitching.
My daughter turned 6 a couple of weeks ago- she lost her first tooth- all things that I was not prepped for. I have spent all this time nurturing them through getting their teeth- I forgot that they lose them. So that was exciting.
and the other hot topic at our house- ZHU ZHU PETS. They have taken all the money that was extra in my wallet. They take up all my extra time- I am constantly searching for these dumb little hamsters for the kids for Xmas. So far I have been pretty lucky. Cooper wants Geotrax. Ford wants everything.
Merry merry.
be good

Tuesday, July 14, 2009

Lots of things going on

Since entering the working world again, I have developed an aversion to saying "NO".  I am burning the candle at both ends, and it is wearing me out-  my body is telling me to slow down, but my heart is enjoying all the activity! 
I am back to work at the salon.  I am doing hair 5 days a week.  I am babysitting a friends kids 2 days a week.  I am occasionally working at a store that does "DIVA NIGHTS"- I am providing waxing.  
I am really enjoying it all- but doing a little too many things.  Now that I have started, I dont know how to stop. =)

My salon job is awsome- I love all the girls that I work with.  2 of the girls mothers have MS.  That makes it a little easier for me to divulge the details of how I am feeling.  They really understand it.
I have had a new symptom for the last 3 weeks.  i am numb from my chest to my ankles. It mostly bothers me in the arm and hand area.  I think that I am struggling to do things with my hands- especially when it comes to blow drying someone's hair.  I am a klutz.

My bothers little girl was hospitalized yesterday- she began having a hard time breathing.  She is normally a very healthy little girl.  She will be 2 in September.
They are thinking it could be viral, and possibly asthma? I hope that it is only one episode - because it hurts me to know that they are so scared for her right now.
So I continue to think positive thoughts for BABY NOLA.  <3 

Alright, back to buzzing tingling numb hands- I am off to work! 

Be good.

Wednesday, April 8, 2009

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

Friday, April 3, 2009

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