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

 

depression

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

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

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

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

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

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....

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!

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

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.