I hate MS

Big week

2010-09-22T13:59:00.001-07:00

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 Tysabri...here 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 www.rebootingkathy.blogspot.com

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!

2010-01-02T21:03:00.000-08:00

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

Happy 2010

2010-01-02T20:39:00.001-08:00

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 www.kimmyjoy.scentsy.us

HAPPY 2010 !

be good!

When will I be able to breathe?

2009-12-07T06:41:00.000-08:00

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

2009-07-14T10:13:00.000-07:00

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.

2009-04-08T00:11:00.000-07:00

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

2009-04-03T23:26:00.000-07:00

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

2009-03-31T21:30:00.000-07:00

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

2009-02-02T21:39:00.000-08:00

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

2009-01-20T21:35:00.000-08:00

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

2009-01-19T21:02:00.000-08:00

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

2008-10-27T20:19:00.000-07:00

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

depression

2008-10-02T13:03:00.000-07:00

Okay, this is a serious subject, but I do not want you to be concerned. I am dealing with things through my doctor...and it is easier to make fun of it than to be serious about it, but I know that depression is a BIG deal.

I sit withmyself way too much lately, you know what I mean? I get inside my head thinking about all the shit that is going on in my life and sometimes it is hard to snap out of it. I want to tell everyone how I REALLY feel, but I am scared that I am giving up and not working on the problem. Marriage is hard. I could write about how much easier my life would be if I moved back to Illinois- the fact is that I have WAY more people that care and are supportive in Illinois than I do in Minnesota where I have lived for 10 years! Then I talk to Stephanie, my very best friend, and she talks to me about not giving up on my marraige, it is easy to walk away, but the reality is that shit sucks in my life right now, a new house did not fix anything. It is just a new house. I still have MS. I still have more medical bills than most people. I have 3 beautiful little kids that are absolutely the reason that I live. I cannot give up on the marraige because of them! I need them to know that I am not going to give up on my committment to their dad. I cannot ever imagine what is like to married to ME. I know Terry has a tough job being married to a person that not only cannot work, but has a lot of medical needs, and is lonely and homesick for a place that I have not lived in for 10 years. I guess you could call me high maintenance in a lot of weighs, not in that prissy, needing everything I ever wanted kind of way. But I am high-maintenance in a medical, need a hug everyday kind of way.

I am depressed, I do not know that my Zoloft is helping anymore. I know that one of the major side-effects from Tysabri is depression. I know that there is a huge likelihood of depression after a person has been diagnosed with a terminal disease. I know that one of the sypmtoms of multiple sclerosis is depression. I know that once you have medical bills stacked up - it is pretty easy to get depressed. I know when you live far away from the people that really care about you it is easy to become depressed. I am aware of all of these things, but it is hard. I feel like it is all my fault- all of these problems that my family is having. If I was never diagnosed with MS - I could still be working full time and making money for our family. If I was never diagnosed with MS we would never have all the medical bills that we have.

Okay, I sound pretty pathetic...again I don't want anyone to be concerned for me...I talked to my doctor about this whole situation this morning and he is helping me deal.

I am sorry that I use this blog to vent- I do not have anyone to listen to me but I can always type on the computer!!

be good

Proud of myself

2008-09-23T22:55:00.001-07:00

Today marks a very important anniversary - one that I work on everyday single day. I have 9 years of sobriety as of today. I started treatment at Chrysalis on September 23, 1999. Chrysalis is an amazing center for treating women with different conditions, primarily alcohol and substance addictions.

To say that I have grown up in thes 9 years is an understatement. I still have plenty to learn. Sobriety was something that nobody else could give to me or do for me. Sobriety is a gift to myself and most importantly my children. I would have never had children if I would have continued being so self-absorbed. Honestly, I probably would have never gotten married. I was really reckless, and I did not care about myself or anyone else. I am lucky to come out of these nine years retaining friends that I have had throughout the years. I have done things that I am not proud of, but I live now focused on making my friends, fmaily and most of all, my children proud of the PERSON that I am. I am not great at being a friend, sometimes I do not return calls, or respond to emails...I am always trying to keep up and I am always falling short. I spend too much time knitting, not enough time on my homework. I spend too much time playing, and not enough time telling my friends (Stephanie, Jill, Kate, Amber,mom,etc...) that I appreciate them so much.

So I celebrate my day today by baking myself one hell of a cake! And making a huge pan of lasagna! And completing my homework to get me one step closer to getting my degree in psychology so that I can become a counselor to help other women become sober and gain power over their lives.

So that picture of Cooper is on here to give a *KISS* to each of you that gives me strength, makes me smile, gives me hope, lets me cry, lets me remember all the great things we did in the past, and allows me to be a part of your lives after all of these years. Thank you for being part of my sobriety. I cannot imagine life without you.

be good

long week

2008-09-12T14:33:00.000-07:00

It has been a long week. I have had lots of homework to catchup on, lots of unpacking left to do, Lucy started preschool at her NEW preschool, we have had a lot of other things going on- just enough to make me feel like I am going to lose it at any moment.
I got through it though- one day at a time, fighting the little battles. I think that my MS is on the bad end of normal right now- and I am sure that it is due to the stress of the new house and new medication. I had the joy of having that damn colonoscopy last week...and as my luck would have it, I had the HOTTEST colonoscopy doctor EVER. When he walked in the room, I said, "Can you please get an ugly doctor, this one is too cute to be dealing with my colon." As professional as he could be, he said something like, "Don not worry you wont remember a thing," To which I responded, "I do not want to forget someone as cute as you!" and then I think they knocked me out.
13 biopsies later, they found no reason why I have been so sick.

So Monday I go in for my 2nd dose of Tysabri...I am not sure how happy I am about that, I feel a little hopeless about my MS.

I am in a funk right now, I am aware of it - things have been pretty tough around here. I went to school with Lucy today for her preschool screening. The person who was doing the testing brought me into the office to go over the results and she asked if I had any concerns because they thought that Lucy was doing great. I told her about the medical situation, that Lucy has been the person that is taking the best care of me, I told her about Lucy witnessing the guy attack me and Ford in our backyard in Minneapolis and how she still has nightmares about that...the woman asked if she could hug me - and I completely fell apart. I think that it was the first time that someone has hugged me, without me initiating it. My kids hug me all day long, not to say that their hugs are less important, but to have an adult reach out to me really touched me. Terry is not affectionate and I wish that he was. It is hard to go through what I am dealing with on a daily basis and not have someone reach out and WANT to touch me or hug me. A hug really makes a bad day feel better, for me at least.

I am not trying to feel sorry for myself, but I think I am allowed to vent (especially on a keyboard) moving to this new town, I do not know anyone! I feel like I am getting to vent when I use this blog. Lord knows that my husband will never be reading this.

I met a really nice couple today that live in town and they actually gave me their phone # so we could get together. That was a really good part of my day. I am feeling isolated and I hate that my source of connections with people are the people that work in the hospital that I get treatments at.

Garage Sale tomorrow- I want everything in my house sold- I want to start fresh!

Idea* (pay attention people, I don't get good ideas but every once in a while) WHY DON'T WE REGISTER FOR GIFTS FOR AFTER WE HAVE BEEN MARRIED FOR A WHILE- i HATE THE THINGS THAT i CHOSE WHEN i GOT MARRIED. I WANT NEW THINGS- NEW POTS AND PANS, NEW TOWELS, SHEETS THAT MY KIDS HAVE NOT THROWN UP ON! I SHOULD START A NEW TREND- AN EIGHT YEAR ANNIVERSARY REGISTRY FOR HOUSEHOLD GIFTS.
I know that sounds greedy- but I did not know what I doing when I got married, I jsut did what the wedding magazines tell you to do- start a registry. I had no clue- I still don't.

I have a million things to get to befire my garage sale tomorrow- I you're going to be in the Big Lake area tomorrow - make sure you stop by! I have a 3 car garage FULL of things for sale!

be good everyone-

All moved in

2008-08-31T23:11:00.000-07:00

We are moved int our new house. Since it is Labor Day weekend- all of our new neighbors are off at the lake, so I have not really met anyone. I am sure in the coming weeks we will all get a chance to introduce ourselves.
I cannot beleive how much CRAP Terry and I have hung on to over the years. I am looking forward to going through the boxes, having garage sales, selling on Craigslist, or renting a dumpster. Terry is still over at our rental property cleaning little fingerprints off the walls...I want to make sure that we get our security deposit back.
I really love this new house! I cannot wait for the sod to go down. The front and backyard are still needing to be graded. I guess they will do that this week. I am sick of my children playing in the big piles of black dirt.

My MS is a worse than normal lately. Everything is flared up MORE than usual. I am not sure if it is the heat, stress, the medication? I am having to keep moving and taking care of everyone and everything, because of us moving. I have had no time to take care of myself- like taking naps and that kind of thing.
I want to be more excited about this new place, but I just feel too shitty. I hope now that we are moved in I will feel stronger.

Final walk through today

2008-08-22T07:52:00.000-07:00

Well, we have arrived at the end of the building process, today is the final walk through and we are planning to close on Tuesday the 26th. Unfortunately, the 26th is Ford's 3rd bday...but he will probably not hold it against us. If he does I will take his toys away, hahaha.
So we went to the new house last night, there are a few things that I think should be fixed up, all pretty minor though. I am thinking that if the builder says it is okay, we are probably going to start moving this weekend. We are hoping to finish it all by th eend of the month because I told out landlord that we would be out...I had no idea that things were going to be so busy for us everywhere else in our lives.
My brother is coming tomorrow. And there is no way that I want to be moving while they are here to visit...but I guess we will have to see what happens.
Things are so busy, I have a hard time focussing on it all. Lucy is starting at her new preschool. We have an open house to attend for that and then a parent night to attend too. I start my new semester on September 2. Moving in to the new house. Terry just got a promotion at his job he is is gone 5 days a week, unlike before where he was only gone 3 days. He is top dog in his department now, which (because he has this wonderful work ethic that I just do not understand) he works way more htan he is required to. He always ends up going in on the weekends and putting in a few more hours, he makes double time after 50 hours a week. I do not like to work - I cannot understand how he does it, although I am appreciative that he workd like he does otherwise, we would not have the things that we do.
I am so super exhausted today...the boys woke me up at 745am...way earlier than should be legal for anyone to wake up...and they were being all lovie! Ford kept holding my eyelids open saying "Mama, WAKE-UP! I LOVE YOU. Your the best mama I ever had." Pretty funny coming from a little guy that we waited for 2 1/2 years just to hear him talk. Although he was slow at learning to talk, he has wonderful things to say. The stuff that comes from his mouth is the fuel for me to keep plugging along through my day.
Okay, well, I have a baby screaming that he wants down from his high chair...so my time is up.
be good

Adding insult to injury

2008-08-21T12:26:00.000-07:00

Okay, so as if I could not have enough things making me feel like crap- I got a phone call this morning to schedule a colonoscopy! I just started Tysabri, I feel like I could sleep until next spring. I do not need to have any other medical reasons to feel like hell.
Background on the colonoscopy---I have had some stomach issues that no one has been able to figure out- diarrhea for 4 months (GROSS I KNOW) So I have lost weight! But not the healthy way to lose weight. So I confessed to my doc after 2 1/2 months of the aweful problem. She gave me more tests than I have ever taken before- No indications of what could be the problem.
So, I am not only closing on our new house on Tuesday, but I am also going to be prepping for the colonoscopy which is scheduled for Tuesday, which is the day that we were supposed to move into the new house.
No more poop talk
On a happy note - 2 more days till my brother gets here! I have not seen him in so long! I cannot wait! I really love being with he and Anne. They are really great people.

Okay, time to go get things done, I have been sleeping since 11am. Time to get packing.
be good

Okay, I decided to take Tysabri anyway....

2008-08-20T20:11:00.000-07:00

So this is how I came to my decision...
The doctor wanted to talk to me before we went forward with Tysabri. My parents decided to come for a visit the week of my appointment. My little girl Lucy had to have day surgery and my parents wanted to be there to help. My appointment with my doctor was Friday morning, and my mom said she wanted to attend. I wanted someone on my side because I was prepared to tell the doctor that there was no way that I was going to take Tysabri...
We get into the appointment, the doctor goes through what has happened in the last few weeks with patients taking Tysabri. He goes through all of the risks and all the other medications too.
My mom asks about the risk if I just do not take anything...the doc says that there is a 95% chancethat I will be permanently disabled from my MS if I do not take anything. My mom is speechless (which if anyone reading this knew my mom, we know Marsh is never speechless).
The doc wants me to go home and talk about it with family and friends. I was driving home and my mom started crying in the car. She said, "I just want to rock you in a rocking chair until all of this just goes away. I am so sorry that your life is so hard." That touched me in a way that I cannoit express in words. I feel like for the first time since I have known that I actually have MS, someone finally recognizes what I am going through. Sadly, my husband does not quite understand it. That is a struggle that happens to TONS of people that have diseases. I remember talking to my doctor soon after I started getting treatment for MS and my doctor told me that divorce is a complication of MS. Spouses often are not understanding, and on top of the stress of the disease, the financial burden of the treatments, the marriage suffers too. I can see this happening to my relationship with Terry. I am very frustrated with him because he is completely in deniall over the whole thing.
Terry likes to blame other things for the way thatI am feeling, he does not like to acknowledge tha multiple sclerosis is something that effects me everyday. If I am trying to nap, he acts like I am wasting the day away. (Fatigue is a horrible symptom of MS) If I forgot to pick up milk at the store, or make a deposit at the bank Terry sometimes acts like I have been irresponsible (Cognitive/memory issues are a big part of MS) If I complain that I cannot walk to the back of Target, so I will sit and wait in the car, Terry gets frustrated because he has to do it instead. My skin is numb from my chest to my toes, my legs feel like they are buzzing, I am tired beyond being a stay-at-home mom of 3 kids under the age of 4. I cannot go outside when it is hot because I lose my vision in my left-eye. I dread the heat- I wear a cooling vest so that I can go to a neighborhood picnic, or take the kids to the park. Life is a little tough, and there are days that I think I would like to have someone elses life. I do feel sorry for myself sometimes, because if I did not I think that no one else would feel sorry for me. I want someone (BESIDES MY WONDERFUL GIRLFRIENDS**STEPHANIE DEANDA**JILL LOSSER**AMBER GORE**JAMIE BUSHMAN**ANNE ROSS) I just want someone to acknowledge what is going on with me. I am feeling a little selfish- I think after the last 2 years of my sometimes rotten life I deserve to feel this way.
Back to my point- I am so happy that my mother heard form the doctor that things are not going to get better. In some way, it makes me feel more connected to her.
So I decided to go ahead with Tysabri, all the other meds offered pretty scary side-effects too. I am going to give it a shot and see what it does for me.
Yesterday was my first dose- 30 minutes of questions, 1 hour of infusion, 1 hour of observation. The rest of the night I rested as best I could....(I had to bring some bodily fluid samples to the lab for the doc***don't ask- that is another BLOG alltogether!!!)
So - I am feeling a little headachey, and super tired- like first trimester tired!! No I am not pregnant! Those tubes are tied! I just am adjusting to the medication.
So if anyone actually reads this- I am so sorry for the rambling, my tired head cannot sort my thoughts.
On a brighter note- my brother Jeff and his wife are coming for a visit from LA. They are bringing their 2 little girls JOSIE (3 years old) and NOLA (11 months). I have yet to meet NOLA and they have never met Cooper! So I cannot wait to see them.
Also we are set to close on our new house in 6 days. We are doing the final walkthrough with the builder on Friday- I am so thrilled to be in our new house.
I do not want to have to go through all of the moving stuff all over again.
Anyway, I am so excited to be starting a new chapter in our lives. It is time to focus on my family and not my MS!
be good

Okay, I am listening!

2008-08-01T15:50:00.000-07:00

I thought that I was doing the right thing by taking Tysabri...in fact, yesterday, I received a phone call to set up my 1st Tysabri infusion (they wanted me to schedule for today, but I rescheduled it to Monday).
So as the days have gone by, I have thought a lot about what COULD happen...the risk of PML is like 1 in 1,000. In my history, if there is going to be a side effect, I will get it. I had to put those thoughts aside for a minute and listen to my doctor. His words were something along the lines of, " The risk is greater if you are on NO therapy, than if you are on Tysabri" Listening to those words really made me think a lot about the way I am handling my disease. I am thinking of the present moment...not looking at things down the road. I really need to stop worrying about what MS is doing to me right now, and think about what we are going to have on our hands 10-20 years from now.
The medications I have taken in the past, have all done "nothing". No effects are measurable from Copaxone. Rebif and Betaseron both gave me painful side effects. I think that I am willing to go back on those therapies - only because they do not have deadly side effects.
By the way- It was one year ago right now that the 35W bridge collapsed. I am sure that I will remember that day for the rest of my life. I was leaving HomeDepot in St Louis Park- and a young man than was collecting carts in the parking lot came running out to us and said- "Do not get on 35W- it just collapsed!" I just stood there - in a moment I heard ambulances and fire trucks and helicopters all racing to the scene. It was one of the worst days I have ever experienced living in Minneapolis. Driving home, listening to the radio, trying to call friends and family. It was one of the worst things when you are driving and look at a car next to you and the person is crying. I deove by a coffee shop in the neighborhood we lived in- and the people were all standing in the streets crying. No one could actually comprehend what had happened. I did not understand what had happened until 6 months later I actually drove to the site and took a look for myself. I had a really hard time doing it before that- I used to live just blocks from the bridge, that is the exit that you get on to go to the Aveda Institute. I lived on 5th Street and the exit that collapsed was the 4th street and University Avenue exit. Pretty intense. Bless all the people that were affected that fateful day. I took the time to sit and be still for the moments that were observed on the news. It stilll gives me chills.
Back to my lesser important rant---
Okay, this is what happened this morning. The phone rings and I see that it is Dr Calkwoods office. I answer, Brenda says, "Hello Kim Its Brenda! I wanted to see if you have gone in for your Tysabri dose today?"
me "No I changed the appointment, now I am going to take it on Monday."
Brenda" Okay Kim Hold the line, Dr. Calkwood would like to speak to you personally."
Me -thinking...is he calling to wish me luck? WTF? I am getting a little nervous now...
Brenda "Here is Dr. calkwood"
Calkwood" Kim I am so glad I caught you, did you already take your dose? Because I need you to NOT go to that appointment. Information that was released last night says that there are 2 new cases of patients that have PML. They are in Europe."
me "wow"
Calkwood "Canary in a coal mine, remember I told you about that at your last appointment?"
me "uh huh"
Calkwood"Well, until I have further evidence and research...I am pulling everyone off of their Tysabri"
me"Wow, I feel really lucky that you caught me just days before I was going to start Tysabri"
Calkwood"Well, 1 dose would not have hurt, but it also would not have helped either"
blahblahblah

So this is what I think-
I think that all of the waiting and the fighting the insurance company and the hospital...I think that that was the reason that I never got the chance to take Tysabri. I think that DEVINE INTERVENTION actually does happen- I think that because I waited so long and my doctor called me at home ans told me not to take the drug- I think that I will NEVER take it!
Further proof-
I went to sit on the couch to digest what had gone on with the Dr and the phone call. I turned on the tv and turned it to the NasDaq report...the report that was on was about Biogen Idec and how their stocks plummeted today because of these new PML cases. They went on to report that Biogen Idec makes Tysabri for Multiple Sclerosis patients who cannot tolerate other therapies (ME) and patients who have severe cases of MS.
If that is not proof enough- I do not know what is.
So WHOMEVER is looking out for me...Thank you. I am listening to whatever the universe is trying to tell me.

Tysabri

2008-06-22T16:01:00.000-07:00

Okay, by now most everyone knows that I have multiple sclerosis. It sucks. It really sucks. The worst part of the disease is finding a medication that will help me. I take a bunch of pills- to help with the pain, muscle spasms, to keep me awake, to help me to sleep, and to help with the depression. The medication to actually modify the course of the disease- THAT is the problem. There are 4 standard injectable therapies. I have taken 3 of them. All of them have done nothing! Everytime I go in after being on Copaxone, Rebif, or Betaseron...there are new lesions on my brain and spine. That essentially means that those medications have done absolutely nothing to help me.
This brings us to last week. Last week, I saw my brain doctor. He informs me it is time to start the drugs with the bigger problems. By bigger problems I mean- death, brain infections, liver failure, melanoma, leukemia, weakened heart muscles...need I go on? My choices include- CHEMOTHERAPY or TYSABRI. Chemo works to mess with your immune system enough to kinda trick your body. In MS your immune system is attacking itself. Chemo has been around for years and years- but you are only allowed 9 doses in a LIFETIME. So my doc thinks that this would be a bad option because I am so "young" and the problems involved with the chemo are not pretty - oh and it may make you sterile. Well, in my case that is not a problem- my little tubes are tied!
This is how we chose Tysabri. Tysabri has been on the market for 2 years. No one knows what will happen to you after being on it for more than 2 years. I guess that it had been on the market a while ago, but 3 people came down with PML, a deadly brain infection. The FDA pulled it off the market. Well, my doctor seems to beleive in this drug enough to prescribe it for me and some of his other "hard to treat" patients.
I have only known that I have MS for a year and a half. I am worried about what the permanent disabilities are going to be. I am walking with a cane, I have a handicap permit to park close to wherever I need to go. The hard thing is I do not look "sick". I am happy that my looks are not failing- but sometimes I wish I looked like I felt, so prople would understand what it is like to live like this.
I slept 8 hours last night...woke up fed the kids, and had to take a 4 hour nap becuase I could not keep my eyes open! Exhaustion is the biggest struggle lately. I want to do things but my body will not let me. I am embarassed by how tired I am all of the time. It is a hard thing to get used to.
The physical symptoms are easier to deal with - sometimes anyway.
Time to make some dinner. More to follow.