Change of Plans – #72

I’ve decided that this is not a good time for a cleanse. As little energy as I have, I can’t compromise it further. At first I was disappointed for my lack of discipline but now I see it as a smart decision. My vertigo is getting better but my strength and energy dwindle all day long. Every morning I feel like things are better like I recharged over night but I only feel well for about a half hour. By noon, I feel like my body is literally disappearing. My legs and arms don’t go completely numb but there is definitely a lack of sensation. I took the steroids a week ago so I am hoping that things turn around soon.

The good news is that I did not have major mood swings after this last Solumedrol infusion. I had one day where I felt kind of down, but knowing what to expect helped. I think the one day infusion was easier on my system than the three days, I just hope it is as effective in treating my symptoms.

More good news – I did my Avonex injection tonight with no bleeding or bruising!

I see Dr. Foley (awesome neurologist) on Tuesday to talk about Tysabri and follow up on my latest slip.

More 100 in 1001
56. No computer, ipod or TV for one weekend
57. Keep an Orchid in the bedroom for six months
58. Grow something edible
59. Download a movie or TV show to Ipod
60. Attend a free outdoor concert
61. Spend the day at the movie theatre seeing at least three movies
62. Don’t talk for a whole day
63. Sell something on ebay
64. Buy all new lingerie

65. Compost

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3 responses to “Change of Plans – #72

  1. in my very limited experience, the fatigue always hits hardest after the other symptoms start to go away. at least the vertigo is better and you are heading in the right direction!

    good luck with doctor foley on tuesday, and i hope you feel better soon. i’ve been thinking about you and sending you “get well” thoughts!

    i like your 101 things, very creative. i like the idea of not talking for a day.

  2. Awwww (((((Courtney)))))), so sorry you had to do ‘roids. But as jen, I think it was, suggested-hard candy during a Sol. infusion, is the key for avoiding “metal-mouth”.

    I personally sucked on lemon drops and they worked like a charm. Peppermints work good too.. hmmm sucking on hard candy during a treatment for a sucky disease? Ironic? 😉

    Loved Mark’s email too! A true Love/Hate relationship (j/k).

    Good luck Tuesday and feel better soon! (((dearheart))), Lauren 🙂

  3. The Patient Connection

    The Patient Connection would like to take this opportunity to invite you to participate in a new blog on Multiple Sclerosis. It would be great if you could do so as it will help us plan research into Multiple Sclerosis over the next few months.

    http://www.thepatientconnections.com/blog.asp?uid=15

    What it is:

    The purpose of this blog is to help The Patient Connection find out more about living with Multiple Sclerosis and how it is treated, its effect on home and the environment.

    Also, you may be aware that in the United Kingdom NICE, the Government’s drug watchdog, has recommended against the prescription of one of the most effective drugs so far developed to treat Multiple Sclerosis. NICE has advised that the efficacy of Tysabri is not proven or that the cost is simply too high.
    “In clinical trials, Tysabri has shown a significant reduction in relapse rates and a reduction in the risk of disability progression.”
    What does this mean? People with MS could face the prospect of an improved quality of life, would have the chance of staying in work and be independent and not rely on State benefits –
    Simon Gillespie said: “The UK is now alone in rejecting this drug. More than 10,000 people with MS in Ireland, Germany, the USA and elsewhere are already benefiting. But NICE has decided people with aggressive MS in the UK are simply not worth it.”
    What are your thoughts? How are you currently treated? Are you fortunate enough to have been prescribed this drug? Do you have to go abroad for your prescription and treatment? How are you currently treated? Have you changed your lifestyle? Do you get the right support from the State, employers, friends, family?

    If you wish to participate in market research now or in the future you can join our research community The Patients’ Voice here

    http://www.thepatientconnections.com/patients-voice/index.html

    If you have any more questions please feel free to get in touch with me on Belinda.shale@thepatientconnections.com

    Thanks for your help

    Belinda
    The Patient Connection

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