Journal Entry for September 15, 2009
September 15, 2009 1:40am
Progress
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Tom1965
2:22am, May 18, 2009
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About Me
Tom1965
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About Me
DX late July of 08. Went to Disney July 4th for the week with my wife and 3 kids. Was feeling great. My youngest, Tessa was turning 4 in Aug. She wanted to go to Disney w/ her 2 big brothers, Tyler 13 and Casey 16 at that time. Her boys as she would call them. They had been a few times. Figured I'd get the trip in while the boys were still interested in going. They went to a lot of Princess meals to make her Happy and I'm thankful to them of being so good to her on her first trip to Disney and I hope we all get to do it together again some day. Druing the next 2 weeks I felt tired and a little weak. My wife, Jen was looking on Web MD. We kept putting in things and one of the things that kept popping up was MS. We pictured one of those children in a wheel chair, straped in at the waist chest and head. It couldn't be that. I work a 40 hr week and 8 to 32hr of OT if they throw it at me. We were very uneducated on MS. The next week I was on vacation again. By Weds. I was having trouble with my left leg and my foot was draging behind me. I checked into the ER at the Hosp. A Catscan showed a large yellow mass on the right side of my head. The Dr. said it looks like you had a stroke a few days ago. I was admitted for more tests. I was being treated for a mini stroke. Weds.night the MRI was done on my head 1 1/2 hr in the tube. On Thurs they showed me and Jen the MRI. It was all cloudy white and had 7 to 10 large white spots the size of Qtrs and up. They told us it was MS. Jen cried like never before and so did I. It was like when Tyler was sick at Yale. We thought we were going to loose him. This time was worse, I thought I was going to loose Jen and my kids. Then who would take care of them. That night was a spinal tap. The fluid was clear. But, it hurt. The next day I had therpy and use of my leg was coming back with no meds. I think I actually had the stroke. Friday night was 3hr in the tube, full body MRI. They found 3 more leisons on my neck and 1 on my back. Couldn't walk after 3hr in that coffin ride. Started the steroids that nite 3hr long and again in the morning, went home that day. 3 more days of IV's. Fresh each day. Went to work on Monday and did OT on Tuesday. I have a bueatiful wife and 3 great kids. When they told us it was MS, Jen said were in this together. For better or worse. I'm lucky to have her by my side. But when they made her take my ring for the MRI and go home. We thought it was over. It's not.
DX late July of 08. Went to Disney July 4th for the week with my wife and 3 kids. Was feeling great. My youngest, Tessa was turning 4 in Aug. She wanted to go to Disney w/ her 2 big brothers, Tyler 13 and Casey 16 at that time. Her boys as she would call them. They had been a few times. Figured I'd get the trip in while the boys were still interested in going. They went to a lot of Princess meals to make her Happy and I'm thankful to them of being so good to her on her first trip to Disney and I
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Interests
Spending time with my wife and kids. Movies, TV and Vedio Games. Having the fire place going and a glass of JD & Coke. Haven't had one since Disney in July. Not sure how body will react. Camping, cooking out and eating in general. Need to gain wt. Lost 24 lbs I want back. Jet skiing, hikeing, fishing, snow skiing and sledding with the kids. Everything I did before. Slowly getting my old life back. Still waiting to win the Lottery.
Spending time with my wife and kids. Movies, TV and Vedio Games. Having the fire place going and a glass
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Journal
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History repeats it's self.
July 23, 2009 4:59am
It's the same time frame as last year. Went to Fla. came back and felt out of wack. Had 2 MRI's Tuesday and 1 more tomorrow, Friday. Legs are …
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Hugbook
Good Luck
now I understand why it has to be a secret.. fortunately I work with technology and it is not physically straining in anyway.. except the long hours.. they are all very supportive of me.. when I got back to work after first dx they all wore ribbons for the MS.. which didn't seem sweet to me.. it annoyed me.. but they were all trying to be supportive.. but what they needed to learn was how to not look at me like I was dying... over the last few months they have been as they always have.. they just know when its a bad day and they ask.. I don't know what it would be like to be forced to retire due to it.. but then again I don't know what its like to work for the government.. was married into the military a while ago.. and I know that is disastrous.. but I work for a private company as a contracted technician... I work hard and support myself and my ever growing need to add more gadgets to my home.. so need the job.. the little man in the picture is my nephew.. he is a real big part of my positivity... he is autistic and epileptic... his grandma calls us her medical miracles.. we are both on the same meds for the shakes.. since this whole thing left me with a tremor in my left hand... I do not have children of my own, and am not sure that I will be able to (though the man in my life would really like one) so he is my substitute.. you said you have 3 children? sounds nice.. I hope that when you get to tell your work about all this they stand behind you.. 20 years should help them recognize they SHOULD.. take care now - Jess*
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Ray of Sunshine
I hope that you don't always feel you have to keep it a secret. I was diagnosed back in march and I have found that alot of my positivity is from talking to friends, coworkers, and others about it. Educating them has helped me become educated about MS. It sucks and I am definately in it with you on the hating this shit.. but you work through it. and I work just about the same as you do, 2 jobs, 40-80 hours a week.. it felt good to let someone else in on it.. so that they could be there to keep me positive when I am not.. I know you want to be strong for your wife and kids, but you need to let others help you be strong.. and they won't be able to help you if you keep it a secret. Keep your chin up!
I’m With You
I always think of that stupid thing, "Never assume, it makes and 'ass' out of 'u' and 'me'" It does, doesn't it? The person that asked you about being there as a patient in front of others violated the HIPPA laws. The minimum fine, if proven, is 10K to the individual and another 10K to the facility. People are idiots. The educated idiots are the worst! :)
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Hug
sorry, if i offend u by saying love ya bt that is how i am i a m very friendly but a good person. hang in there.
Superhero Status
Hi I just read your profile after reading your reply that Janet Reno was a remote boss to you.. You have had quite a rocky road with MS and are now in the very first uncertain year. It was a terrible year for me and I'm certain it's not the best year you have ever had either. But you will make it through, because you have no choice but to get through. Your a very strong individual too. In your profile you wrote how concerned you were that MS may be passed onto your kids. Also that your reading much about MS. So you already know that MS is thought to be a combination of genetic susceptibility & some type of environmental trigger that sets it off. I just want to remind you that if one of your children encounters the environmental trigger that sets of the genetic susceptibility in them, it will be found and treated sooner and they will do better, if they do get it, because you took the first hit and made the genetic susceptibility visible. I also wanted to tell you, given the MRI that diagnosed you,to keep your eyes open to Tysabri. Which is not a 1st line medication, it's recommended after one of the standard drugs have been used. But it does have a 60% effectiveness instead of 30% of beta. It's just not first line treatment, something else must be tried first. And whenever it comes time to move on from betaseron, whatever else more effective is available then. Now it's Tysabri. When I was diagnosed I was placed on betaseron, it worked great for me for 3 years. Then I started having a build up of lesions. The treatment plan for a chronic illness is to treat it with medication that is effective for as long as possible. I got 3 years out of beta, 3 good years of clean MRI's. I couldn't have asked for more. I hope you too get many years of betaseron controlling your MS. But given the activity on your MRI, I don't think you will go to one of the standard meds when beta becomes ineffective. Keep an eye on TY. I think that will be your next MS med, unless something else more effective comes out.. Besides any symptom drugs you chose to use. But I'm sure you have already read about all this. I'm not certain why I felt a should say it? But I did. I hope your first year has been a good MS year for you. Take Care. Lynn
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Close Multiple Sclerosis (MS)
Type: Relapsing-remitting MSTreatments
- Betaseron Too Soon to Tell
- Started on 09/2008. Not sure if it helps or not. Still confused over the whole thing.
- Solumedrol Too Soon to Tell
- 5 days in a row 07/2808. Not sure if it did anything good.
Close Veterans
HMM 262 Flying Tigers MCAS K-Bay HI, 1985-89. DX w/ MS in 07 of 08. Looking for any answers I can find.
