It is not that I don't continue to think of you all....it is judst that my plate has been kind of full lately. It is 2:30 am in a hotel in Ocala Florida....on my way to Delray Beach. My husband is sound asleep...as he has been driving all day and I sleep a lot during the day. We have had to put my dear Mother in an "assisted living " situation. She is not able to care for herself anymore and I have to go and clear out her condo....not looking forward to it......Sometimes she remembers who I am ....sometimes not......We are driving as I need to bring home lots of family "stuff" My brothers handle all the financial "STUFF" and I get to handle all the emotional "STUFF"...been a long time since I have road tripped with my husband......falll back easily into old habits. I am now 3/4 into a bottle of wine and decicded to write you guys....
It has been a challlenging year.....I know I drink too much wine, but it helps me cope. I am going to share my daughter's letter/personal story of her MS. I don't know how many of you watched Oprah and Montelle Williams about his MS and the pain he goes through each day.....God bless him for sharing that. I thought I would include my sweet sweet Kathleen and her personal story on the MS Walk site. I read this and I cry, tears streaming down my face wishing that it was me and not my daughter that is suffering with this incurable disease. I am at the end of my life and she still has sooo much yet to give, but it is not to be,
Kathleen's MS Journey
My Health
I am still in a daily fight against MS. I will honestly tell you that some days it feels like the MS is winning but I am strong & so I fight every single day.
It has been a tough year with lots of ups & downs with the MS. Last year right after the MS walk I suffered from an eye problem that caused me to have double vision pretty bad. My eyes were not working together because the signal from my brain was not working right. I did a 3 day IV steriod treatment at the hospital & was feeling better in a week.
It was hard because I couldn't drive & became dependent on lots of people to help me out. I remember my cousin Jon driving me all over one afternoon to run all my errands. He was amazing. He took me every place I needed to go & never complained for a minute (well maybe 30 seconds). It is hard to ask people to help- at least it is for me so it is nice to have family close by to jump in. I remember telling Jon I was fine & that I didn't really need to go anywhere & I remember him saying he would be at my house in 20 minutes & he was- thank goodness.
The next few months I was feeling pretty good & not in much pain. The boys kept me busy & I decided I wanted to find a new doctor. I wanted a neurologist who was an MS specialist. I was lucky enough to get in with one of the best at the UW, Dr. Luzzio. I went to see him in August of last year. I just wanted to meet him & have him look my MRI's over & touch base with him so if I had a problem in the future he would be the one to help me.
It turned out to be much more than just a meet and greet. He looked over my MRI's & my chart & was alarmed at the progress of my MS. He felt that the drug I was taking was not stopping the progression & that I should be off it but wanted to do another MRI to see what was going on for sure. I was slightly alarmed but glad that I had him on my case & checking things out.
I had the MRI & went to Florida to celebrate my grandma's 93rd birthday. My sister, my mom, my aunt Shelia & my cousins Carol & Kathryn all came too. We had a great time & helped my grandma celebrate. It was precious time with her and I will cheri**** forever.
When I got home I had an appointment with Dr. Luzzio & was not too worried as I had not heard anything from his office. Turns out that was an oversight. He sat me down & told me that I had a new active lesion on my brain. Many of you know that I always go to my doctor's appointments by myself. It is my choice to do it because I want to be able to talk about the pain I am having without upsetting the person with me. But that day I was wishing I had a hand to hold.
Dr. Luzzio said lots of things that later I had him repeat. He wanted to get aggressive and switch my drug. OK. He said our main goal right now is to stop the MS from progressing any further. OK. He said that I might have some trouble with the new drug but he really felt this is what I needed. OK. He also said that I might start feeling some of the effects from the new active lesion. OK, wait I already was but had been ignoring it. Not OK.
I truly believe that God puts people in our life for a reason and that day he put me in Dr. Luzzio's office to help me fight my MS. God also put my very good friend Julie Rae on the phone with me as I sat crying in my car. She told me that everything was going to be alright and that God was with me and I really believed her- after she said it a few more times. He also had arranged for me to meet my one of my best high school friends, Liz Heinrichs, for lunch. I wasn't sure I could get out of the car to meet her but I did and when I saw her it all seemed OK. There is something about people who have known you for 20+ years. There is a shortcut that you are able to take with those friends and it is invaluable- which is what Liz was that day to me.
So I am on the new drug, Rebif. All MS drugs are injections. I was doing a daily injection but now I do this drug 3 times a week. It was a very rough start. It gives you flu like symptoms & I thought- no big deal. I was wrong. I actually felt like I had been hit by a bus. They start you off on lower doses & build up to the full dose. It certainly is no fun feeling like you have the flu almost every day. It is all the aches & pains that constantly remind me I have MS.
I just saw Dr. Luzzio again & he wanted to give me pep talk to keep me on the drug. We talked about all the pain I am having- some from the drug and some from the MS. The next drug I would go to is much more severe and he is worried about those side effects. I assured him I was strong and could tough it out.
I come from some pretty strong stock that has a long line of fighters. And so I fight every day to get better, to make better decisions about my health, to enjoy each day with those that I love, to be a good mom to Gavin & Wyatt and when I put my head on my pillow and close my eyes each night I hear Mark whisper "I love you" I know I can fight.
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My boys in the tub!
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Please forgive me for being absent from you....with Kathleen, my Mom and the real estate market it has been a challenging time.I love you all. and I so enjoyed seeing sweet sweet Janet in Texas last month. My plate is full.....but I love you all.
Marti