Make New Friends, But Keep The Old

I have been looking forward to Jack starting Kindergarten in hopes of meeting some new friends myself. We have been walking to and from school with one of our neighbors and playing outside with them after school. I really like the mom and she also has a three-year-old little girl that Lauren has really hit it off with. I can't believe it has taken us this long to get together with them. We have even secured an invitation for dinner and swimming at their pool this weekend.

Yesterday we were standing outside my front door chatting. We had a UPS package on our porch. Lauren picked it up and started tearing into it. She got used to all of the packages being she and Ben's for their birthday. I looked at the package and told her that it was addressed to me so she didn't need to open it. I turned and continued to chat with my new friend. When I looked back she was still trying to get into the package. I told her that there were just some vitamins in the package for mommy, go play. The next thing I knew she was waving a catheter over her head, "What's this?"

I didn't address it with my new friend. I just grabbed it away from Lauren and stuffed it back in the box. I continued to chat hoping that she didn't see it or didn't know what it was. My new friend didn't go running for the hills, I think she might be a keeper!

Party's Over

There are very few things that I get to choose with MS. I don't get to choose whether my legs will work or not. As a matter of fact, I fell for the second time in two weeks while carrying Ben the other night. Ben now reminds me while I am carrying him "don't fall, mama!” I don't get to choose how well my eyes will work from day to day. And, I didn't get to choose how long my bladder would last. But, I do get to choose one thing. I get to choose how I will deal with the cards I have been dealt. You see, you don't choose the cards; you can only choose how you play the hand. I have chosen to play with a positive attitude! Feeling crappy, being depressed, being pissed off isn't going to improve my diagnosis or my symptoms. If anything, it will make it worse. Having a positive attitude makes me feel better from day to day. It makes my kids life better to have a positive mom and it makes my husband excited to come home to a happy house each night after work. So bad attitude, this is your notice; the pity party is over. You don't have to go home, but you can't stay here!!

Perspective

I have had a particularly crappy time with my MS lately. I am not having a flare, but I am finally getting into the neuro-urologist and my neurologist and let's just say the news was not great. I spent a good portion of last night and this morning throwing a little pity party for myself. On my hour long drive back to the doctor this morning the kids and I witnessed a horrible accident on the freeway. I was traveling south and the accident was on the northbound side. Someone changed lanes and clipped the corner of a man in an SUV who lost control, flipped his car and hit the center guardrail right in front of us. The motorcyclist in front of us and I stopped and tried to get the man out of the car. We couldn't pry the doors open. The EMTs arrived almost immediately. Three of the men were able to bend the door open. The man crawled out stunned and covered in blood. The EMTs put him in a neck brace and cut his clothes off to assess his injuries. My knees shook and my stomach was weak as I watched. I was nearly in tears when I returned to my car to answer my children's questions.

Jack: Is that man going to be okay?
Me: He had a bad accident and is really hurt, but he is going to be okay.
Lauren: Does he have any kids?
Me: I don't know, it looked like he was on the way to work, he could be a daddy.
Ben: What will happen to his kids?
Me: His kids will be okay the man will get better.

All the while I was hoping that I was telling the truth. It really shook me up too. It really puts things into perspective. It could be a lot worse. I need to take some time to look at the good things in my life. I may post the details of my appointment at a later date...and I may not. I am choosing not to think about it right now.

I Am Not Superwoman

I started off the morning calling a friend whose mother died two weeks ago. I am a crappy friend and haven't talked to her since I saw her at her mother's visitation. It isn't that I haven't been thinking of her, I just don't know what to say. I would be totally devastated if my mother had died so early. I am sure I was totally lame, but at least I let her know I was thinking of her. Then I got a call from a friend that is experiencing symptoms that seem to point towards MS. She is going through all of the fears and negative thoughts I did 7 years ago. I feel so terrible for her because I understand her pain. I feel like I was a much better friend to her because I have been there. I just can't imagine losing my mom, so I am having trouble knowing what to say to my other friend. Talking to my friend who is going through her medical tests reminded me of what I wanted to do with my life before we had kids. You see, I didn't think I was a stay-at-home mom; I thought I was a working mom until I actually had Jack. When I was diagnosed with MS, I had an appointment with a really crappy neurologist who had no regard for my feelings. My friend had a similar experience today. When I found my nurse practitioner I thought that was the career for me. She was the "personal" side of medicine. I loved talking to my friend this afternoon, not because she is going through this pain, but because I think I helped. I told Travis about my renewed desire to become a nurse practitioner. Travis wasn't exactly supportive and told me I was too old. By the time I get through school I will never make the money we would spend on school back. Not easy to hear, but probably true. Travis did suggest that I explore volunteering at the MS Society in the public speaking or counseling aspect. I think I will do that! Shortly after I got off the phone with that friend I got an email from another friend who was 11 weeks pregnant with twins. She went to the doctor today and both babies are dead. The doctor couldn't find either heartbeat. She will have to wait for the babies to pass and if they don't she will have to have a D&C. She is devastated. Again, I felt like I could relate to this loss so I called her and spent quite a long time on the phone with her.

After all of my phone calls I decided I still needed to be productive. I cleaned the kids' rooms, picked up downstairs, did a little work on our rental property venture, picked up Jack from school, went to the cleaners, the bank, the post office and topped it all off with a trip to Walmart. I was hurrying in attempts to make it to my gym class on time. All the while I was thinking about my friends. As I was leaving Walmart, I was feeling pretty good about myself. I had done my best to be a good friend, gotten most of my chores done, taken care of the kids...I was superwoman. Then, I realized I didn't have my car keys. I spent several minutes rummaging around in my completely unorganized purse with no luck. All the while Jack was nagging the hell out of me. "What are you doing mommy?" "What are we waiting for?" "What are you looking for?" "Did you loose your keys?" "How are we going to get home?" "Are we going to be late for the gym?" "Do you need to call daddy?" "How about we call Ms. Trisha?" Meanwhile, Ben and Lauren are running amuck and my milk is becoming lukewarm in the 80-degree heat. I walked to the car dreading that I had locked my keys in the car. Great news! The keys were in the car, it wasn't locked and nobody stole my car! I loaded our groceries, loaded the kids and drove home with a renewed superwoman feeling. When we arrived home, I opened the garage door to realize that one of the children had left the door from the house to the garage wide open and I hadn't noticed. That settles it I am not superwoman. I can't do it all. I did however manage to get dinner ready for the oven and get to my gym class in time. I am not so bad after all!

Why I Walk...

Every hour of every day, someone is diagnosed with MS. My hour was in December of 2000. I started feeling symptoms when I was about 15 years old. I was having knee and hip pain, but the doctors attributed my pain to my competitive swimming. The pain continued throughout high school and college. My mom paraded me in front of every doctor she could think of in search of an answer. It wasn't until I started having numbness in my legs and hands that Travis and I googled my symptoms and found MS. We requested an MRI from my primary care physician who didn't think it was necessary but patronized me and ordered the test. After the MRI the doctor coldly called me at work and dropped the life-changing bomb. But, that's not why I registered for the MS Walk and that's not why I'm asking you to support my fund raising efforts with a tax-deductible donation.

I walk for my husband and my kids. When Travis and I got married we had big dreams. We dreamed of working hard, saving for retirement and enjoying our hard work by traveling the world. When we married, we didn't know my fate. I feel horribly guilty that Travis may not be able to live out his dreams because I am disabled. My kids didn't ask for this. I want to be able to continue to be active and play with them rather than watch them from a wheelchair. They deserve a mom that can drive them to school and practice, not a mommy who is blind due to MS. I give the kids 400 units of vitamin D on a daily basis in hopes of preventing this fate in them. Please visit my website and make a donation.

The National Multiple Sclerosis Society is dedicated to ending the devastating effects of MS but they can't do it without our help. It's faster and easier than ever to support this cause that's so important to me.

Any amount, great or small, helps to make a difference in the lives of people with MS. I appreciate your support!

If you would like more information about the National Multiple Sclerosis Society, how proceeds from the MS Walk are used, or the other ways you can get involved in the fight against MS, please visit nationalmssociety.org.

As you know I don't show my kids faces on this blog, but when you show your support by clicking on this link to make a donation you will receive a special treat and see a full frontal picture (get your mind out of the gutter, our faces!) of my family.

Thursday Thirteen I

In honor of my second Tysabri infusion I am going to partake in my first Thursday Thirteen.

Thirteen Things I Hate About Infusion Day

1. Remembering to write a note so Anne can pick Jack up from school. Anne even called me yesterday afternoon to remind me to write the note. I said I was going to write the note and stick it in Jack's bag as soon as I got off the phone. Apparently I got side tracked because I didn't think of the note again until we were sitting in the carpool lane at school. I had to scribble the note on the back of my grocery list. I guess it is a good thing Jack can't write so the school doesn't think he forged the note!

2. The moron in the HOV lane only going 55mph in a 60mph zone. If you want to go slow, get out of the fast lane you idiot! There is a special lane for you slow movers on the right, use it!

3. The appointment setter. I had trouble setting the appointment in the first place. Apparently she is used to dealing with people who have no life. It was very frustrating to her when I told her a date or time wouldn't work. Today when I arrived she looked at me and said, "What time was your appointment", "1 o'clock" I say. "Nope, you aren't on the schedule today, how do you spell your last name". She finally looks me up and says "your appointment was last Friday at 9am, you were a no show". She then proceeded to tell me that it is not their policy to call when someone misses an appointment. I see, I guess it doesn't matter if I have died. Lucky for them, they were able to work me in so I didn't have to kick some ass!

4. The damn scale at the doctor's office is 5 pounds heavier than the scale in my bathroom. Kick me while I am down!

5. All of the canes, walkers, orthopedic shoes and wheelchairs. On most days I am able to convince myself that those things are not my fate, but watching all of the people with my same disease struggle to walk really brings me down. Yes, I prefer to live in denial!

6. I was so bored! I had to sit in a little room all by myself because they were "fitting me in". I had my iPod and a book, but I was lonely!

7. The infusion administrator is hard of hearing. He wears hearing aids, but they are not doing the trick. Every time my IV would beep I would have to stretch my IV stand from the plug in the wall, then stretch the plastic tubing attached to my arm so I could peek around the corner and get someone's attention because the administrator couldn't hear the beep since I was in no mans land!

8. I was tethered to my chair without the opportunity to go to the bathroom for two solid hours. Coupled with the hour drive it took me to get there and the 4 sodas I drank this morning equaled disaster!

9. I was starving. I couldn't even find a mint or a baggie of crushed Cheerios in my purse to munch on.

10. When my infusion was finally complete I had to be observed for another hour. The administrator brought me into the main room where I had to sit with a very large woman crunching unidentifiable, very odoriferous food. She had already commandeered the remote control so I was stuck watching 'Who Wants To Be A Millionaire?' She was yelling out the answers, but they weren't the right answers. She was getting the $100 questions wrong. I wanted to rip the food out of her hand and beat her over the head with it! Take the quiz; are you smarter than this woman?

Which word is not synonymous with Hullabaloo?
A. I can't remember
B. I can't remember
C. Thingamabob
D. Uproar

She was insistent that the answer was Uproar, she kept yelling at the TV until she realized she was wrong.

Sloppy Joe's bar in Key West, FL has a look-a-like contest for which famous author?

A. Hemmingway
B. Thoreau
C. I can't remember
D. I can't remember

Again, she was wrong. Again, she was insistent that the answer was Thoreau. Don't be stupid lady! Save your conversations with the TV for when the two of you are alone!

11. The IV was in my inner elbow, but somehow I ended up with tape all over my arm hair. For some people this isn't a big deal. However, I am not one of those people. You see I shaved my arms for big swim meets when I was in high school. Just like your legs, your arm hair grows back thicker each time you shave. Needless to say the tape pulled more hair off my arm than the average man!

12. The infusion is a form of Chemotherapy, so it makes you really tired. Just to make sure I was good and tired for my drive home they make me take a Benedryl. I could hardly keep my eyes open!

13. By the time I got back on the road I was stuck in the heart of rush hour traffic. What a nightmare, at least I don't have to do that everyday!

Life Is A Bowl Of Cherries

Right now, it's the pits. I have been feeling really strong lately with the help of Pilate’s, but apparently that has been helping to cover up the most recent effects of my MS. I had a doctor's appointment on Halloween and I failed some very basic tests. The neurologist stabbed my foot with a safety pin (literally) starting at my toe. I could feel that he was touching me, but it didn't feel sharp until he got close to my ankle. I am also having a problem with clonus, which means the doctor can make my foot twitch like an epileptic. Based on the neurologist's assessment the Copaxone injections I have been doing daily are not working as well as they need to. The doctor feels that I am destine for disability on the current path. The good news is there is a new drug, Tysabri. Copaxone has been proven to reduce disability by 30% while Tysabri reduces disability by 90%. Seems like a no brainer (no pun intended), right? Wrong. The problem is that Tysabri is a new drug. It has only been around for two years. In the initial testing they had a group of people who took Tysabri, a group that took a placebo, a group that took Avonex and Tysabri and a group that took Avonex and a placebo. Of the 600 and some people in the study three of them developed PML, a horrible brain disease. Of the three people with PML, one died and one is a vegetable. However, the three people who got PML were in the group taking Avonex and Tysabri. So what did they learn? Don't mix Tysabri with other drugs. At this point there are over 23,000 people worldwide taking Tysabri as a monotherapy (a therapy that uses only one drug) and there have not been any other cases of PML. So, we have made the decision to change my medicine. I have stopped taking Copaxone for the last 2 days; I have another 28 days to be sure the drug is out of my system before I get my first IV. In the meantime I will be sorting things out with our health insurance company.


This has been a scary decision. I don't really want to live 40 years of my life being disabled; so taking the "calculated risk" of Tysabri is the way to go. But, then I start to feel selfish. What if I do end up with PML and die, who will take care of my kids? Or worse yet, I become a vegetable and want to die. For the record, if I ever become a vegetable PULL THE PLUG! That makes me feel really guilty that I am putting my fears above my children's well being. Which then starts me spiraling into a very unhealthy stream of conciseness that goes something like this: Who am I kidding? The kids will be fine without me. They have lots of people who love them. They don't need me. I am worthless. Nobody needs me. Nobody would notice if I were gone. I am wasting my time as a stay at home mom. I should just go eat worms!

I feel terrible that I have put Travis into this situation. I wasn't diagnosed with MS until after we were married. He didn't know what he was getting into when we got married. Now he is faced with going through this decision with me. He will be the one stuck being a single parent if something bad happens. But, at the same time if I become disabled it is his retirement dreams that are ruined. Since we started dating we have dreamed about retiring early and traveling and living it up as a reward for our hard work. Then the stream of conciseness starts again. If I die Travis would be better off. He would get my life insurance and could remarry someone who would be able to take care of the kids and live our dream with him. Am I that easily replaced? Would Travis feel relief? I love him so much that I want him to have the very best life and I am dragging him down.

I want to live a long and healthy life. I hate this self-destructive self-talk. I don't know how to turn that voice in my head off. I try to tell myself that God will not give me more than I can handle. Together Travis and I can get through anything. We have been through so much that there is no question in my mind that we can do this too. But, it seems like the destructive self is speaking louder than my inner cheerleader right now.

The kids know something is up. They notice that Travis and I quit talking when they enter a room. They notice me crying on my friends' shoulders. They try to over hear conversations I am having with my parents. I don't want them to worry. They can't know what is going on. At the same time, I need a little understanding from them. The stress of all of this is sending me into an episode.

There are a lot of positives that have and will come from this. I get the opportunity to take the most aggressive MS drug on the market. This drug has actually reversed the effects of MS in some people. It will buy us the time that we need. Through all of this I have been reminded about how great my friends and my husband are. I have such a strong support system. I feel so lucky! Travis and I have been through hard stuff and it has made us stronger. This will just make us stronger!

What A Difference Ten Degrees Makes

Last week it was about 105 degrees everyday and I was hurting! I used to say that hot is hot and it doesn't matter whether it is 90 or 100 degrees, I am still sweating. I will admit that I was wrong. My body doesn't like 105 degrees. Cold is the worst temperature for my MS, but when it is over 100 degrees for 7 straight days my body just shuts down. I continued to go to Pilate’s, but I felt like I lost ground everyday. I even fell when doing a particularly tricky maneuver called standing splits. The fall produced a softball size bruise on my upper leg/lower ass. The next day when I met friends at the beach club I had to stop at Target for a cover-up so I didn't look like a battered woman in public! This weekend we went to the lake with friends to tube and water-ski. It felt good. I haven't skied for at least 10 years, so it wasn't pretty, but I did it. The weather is finally back in the 90s, I went to Pilate's this morning and although I was sore from attempting to recreate my 20s last weekend, my strength was back. I feel great!

No Pain, No Gain

Yesterday I actually paid for an ass kicking Pilates style! Correction, my insurance company paid for it. My neurologist referred me to physical therapy 3 times a week so I am going to a place that does Pilates physical therapy. Basically, I go there for a personal training session. It is so deceiving; yesterday it seemed too easy, like I wasn't getting a good work out. By the time I got to my car to leave I was feeling a little sore. This morning I feel as though I was hit by a truck rather than doing a few stretches yesterday! But I guess it is working. My trainer would be telling me that I was wrong, he says the saying "no pain, no gain" keeps him in business. Coaches use that to push their athletes too far, and then they end up getting therapy from him. I don't care what he says in his whispery little voice, "no pain, no gain" is a saying I have lived by for a lot of years, in life as well as sports, and I am not about to stop.

Big Girls Don't Cry

Lauren had her first haircut today. I was so proud of her, she didn't cry at all. Well, actually she whimpered a little when the hairdresser was wetting her hair. You know how she doesn't like to get wet! After that she stayed really still because she was promised sparkles in her hair if she didn't move. She looks so pretty and grown up! I had to bring Ben and Jack with us too, I only had to talk to them a couple of times about behaving, but they were really great too. I was just counting my blessings that there wasn't a melt down at the salon and wanted to leave as soon as possible without incident. After I got the kids all loaded into the car I realized that I had forgotten to pay. I was so embarrassed, I had to run back in and admit that I was a little overwhelmed!
I have been spending the last couple of days throwing myself a pity party over my MS trouble. Travis has been so supportive; he has really reminded me why I married him. He knows just what to say when I am feeling down. He has encouraged me to fight. It has taken me awhile to let it soak in, but I am not going to take this lying down! Yesterday I called my neurologist and got the next available appointment...October 25th! Can you believe that! I did some research online and found that other people have had success with physical therapy, so I got my neurologist to give me a referral to a physical therapist and as soon as we are insured again I will start going!

Trisha's dad sold office space in Santa Fe to Life Vessel, which is an enclosed, patented unit in which light, sound, frequency, and vibration are imparted to the patient. It is non-invasive. The Life Vessel does not cure, heal, or mitigate disease. It just supports the body's own natural healing ability to do so. The Life Vessel detoxifies and removes stress from the body. It also helps balance the Autonomic Nervous System (ANS). The ANS regulates every conscious and unconscious function and organ within the body. A balanced ANS is critical to a balanced and effective immune system. If the ANS is out of balance, health will deteriorate and may not improve no matter what else is done. I know it sounds a little over the top, but I am willing to try anything! It won't hurt me, but it might help!! Plus, it will give me an excuse to go back to Santa Fe!!

It is my responsibility to be positive. I need to make myself better and I will! My kids deserve nothing but the best. I am constantly looking at my life and thinking about how lucky I am. I have three beautiful, healthy, happy kids and a wonderful, hard working, supportive husband, they deserve more than the depressed lump I have been lately. So, those of you who are hanging out at my pity party...you don't have to go home, but you can't stay here! The party is over!!

"Bring Out The Gimp"

"But the Gimp's sleeping."
"Well, I guess you're gonna have to go wake him up now, won't you?"
I really didn't care for Pulp Fiction; actually I disliked it so much the first time that Travis and I walked out of the theater. But, that isn't the point I am trying to make.

Trisha and I took the kids for a walk this morning and I was so gimpy it was embarrassing. My leg started tripping less than half way through and got so bad by the end that I was just glad that I could use the stroller like a walker. I just hate this MS; it is really pissing me off!!! A special thank you to Trisha for putting up with me.

Ben is in a mood today. He really hasn't stopped fussing at me since he woke up this morning. The poor little dude is trying to tell me something and I am just not getting it! I can't wait until he is old enough to feel guilty for treating me crappy on days that I am gimpy!

Kick Me While I Am Down

Travis took my car in for service today, so I was basically stuck at home with three kids under 4 and a Porsche Boxster. Travis had dinner with some friends from his old job so I put the kids in the stroller and headed over to Trisha's for dinner. On our way over Jack was talking a mile a minute:
Jack: Look at the doggies, mom
Me: I see them
Jack: I think that man is angry with them
The man was walking a Bassett Hound and a Black Lab; the Bassett Hound kept running into the bushes and twisting the leash around them. When we were walking past the man I said, "Those dogs look like they are more trouble than kids". The man took one look at me and the three kids in the triple stroller with the open bottle of wine in the pocket and said "I bet it would go better if I carried a bottle of wine!" For the record, I hadn't even had a sip of wine, it was to have at Trisha's.
Jack: What are those black lines?
Me: Tar
Jack: What is that for?
Me: They are expansion joints for the woad
Jack: Mom, the word is Road, can you say rrrroad?
Lauren: Road!
Jack: See mom, even Lauren can say Road, can you say rrrroad?
Me: Yes, Jack I can say road.
Jack: Then why didn't you say it the first time?
Kick me while I am down Jack! Lately, when I am exercising I end up slurring my words when I get a little fatigued. I don't really know how to explain MS to Jack. I have told him that I have MS and he knows that I have to have a shot everyday, but he doesn't know anything about the symptoms. I don't want him to be scared, but I do want to teach him to be understanding of people who are different than him.