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

kim

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.

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"