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General Questions and Answers For learning, sharing your experience, and exchanging information about Multiple Sclerosis. Please discuss medications in the Medications forum, and natural supplements in Tara's forum.

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  #1  
Old 03-22-2012, 05:26 PM
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BlessedWyoMom BlessedWyoMom is offline
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What have you done for YOU lately? (this week)

Yup, I'm going to keep asking. I think it's important for us to do things to make ourselves feel good on a regular basis. At least for me, I am trying to stay out of the pity party pit and be open to having a positive and giving attitude. I know that this will be beneficial for my husband, my children and me. Now that my 9-year-old son also has an autoimmune disease (Type I diabetes), I know that it's more important than ever to demonstrate a positive rather than fatalist attitude about my illness.

I have been approved for Tysbari for quite a while, but starting it was put on the back burner with my son getting sick and adjusting to our family's "new normal" of blood sugar testing and insulin dosing.


I was supposed to have my pre-Tysabri MRI the week my son was in the hospital so I had to cancel it, but finally rescheduled it for today. My neuro only did a cranial rather than the usual cranial, cervical spine and thoracic spine MRI to serve a baseline to compare to my future PML-monitoring MRIs. The amount/size/number of lesions has essentially remained unchanged since my May 2011 MRI. I have one active lesion.

This is all good news, but it does not change the fact that my disease progression has changed drastically in the last year or that I don't struggle with things I never have until the last year, including cog fog, sustained mobility issues, dizziness and vertigo.

While I am anxious about begin. ning Tysabri, I scheduled my first infusion for tomorrow. My neuro's office is also an infusion site, so I will be in familiar surroundings with my neuro just down the hall. The nurse practitioner said that most people are pretty anxious for their first infusion, but overall tend to find it anticlimactic. Though I'm scared, I know it's time to take care of myself. I've been off all DMDs since July 2011 so it's time.

Also, I've spent a lot of time watching the Decorah, IA eagle nest that Lexie posted about.

So, that's what I've done for myself so far this week!
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  #2  
Old 03-22-2012, 05:46 PM
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TheBeans TheBeans is offline
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Lisa, it sounds like you've taken a lot of positive and strong steps to improve your world, your outlook and being sure to do something for you! Good job!

Let's see....for me, I finished some sewing I'd been planning on doing for our travel trailer and it turned out better than I had thought it would, so that made me smile. Tonight I am giving my poor, dry, cracked hands a dip in a warm parafin wax bath, so that's a good thing.

Oh, and I gave myself permission to sleep in late every day this week because I've been battling fatigue like crazy lately.
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Old 03-23-2012, 02:24 PM
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Lisa, it sounds like you've taken a lot of positive and strong steps to improve your world, your outlook and being sure to do something for you! Good job!
I have come to realize that I must make a conscious, daily decision to have a positive attitude. My first 13 years following diagnosis were relatively benign MS-wise. The last year has been very difficult. I realized that I was finally going through some of the steps most go through at initial diagnosis. When I was diagnosed, I was young (20) and still foolishly thought I was invincible. No dumb autoimmune disease was going to slow me down. I don't think it was denial, but I recovered very quickly and had very few problems for many years and just assumed that's how the course of my MS would be forever.

I have been wallowing in a pity party and "giving in" for too long and need some accountability to make sure I live more positively. I think it's especially important with my son's new diagnosis of diabetes. I want him to realize that he can still do whatever he wants, despite his life-changing illness.



Quote:
Tonight I am giving my poor, dry, cracked hands a dip in a warm parafin wax bath, so that's a good thing.
I live in Wyoming where it is very dry and my skin, hands y a paraffin bath sometime.
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Old 03-23-2012, 08:14 PM
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I decided that I wanted to do something to make myself feel pretty so I painted my toenails...a deep red. My fine motor function, especially in my dominant hand, is not great, so it doesn't look perfect, but it does look nice if you don't look too closely. My husband really likes it and I feel a bit prettier, so I guess that's all that matters.
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Old 03-23-2012, 08:45 PM
gomer gomer is offline
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Blessed Mum....

How is your son doing?

There are a couple good diabetes books out there. Think like a pancreas and pumping insulin are the most recommended and both inexpensive on Amazon. The pumping book has lots of good info applicable even for non-pumpers like me, I am on MDI.

I am working on my MS service connection claim.



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  #6  
Old 03-24-2012, 09:25 AM
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Originally Posted by gomer View Post
Blessed Mum....
How is your son doing?
There are a couple good diabetes books out there. Think like a pancreas and pumping insulin are the most recommended and both inexpensive on Amazon. The pumping book has lots of good info applicable even for non-pumpers like me, I am on MDI
Gomer Sir Falls-a-lot
Thanks for asking about my son. He is doing very well and returned to school last week. He decided on Thursday at school that he wanted to do his own finger poke before lunch and has done all of his blood sugar testing since. I am very proud of him.

For the time being, he is also on MDI, but if all goes well, the doc was saying we might be able to look into a pump as early as this summer. We are still on a sliding scale, but will soon begin carb counting. I am excited for that because, while it involves some calculations, it will definitely make mealtimes easier if we don't have to hit the approx same carb count at every meal.
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Old 03-24-2012, 11:17 AM
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blessed mom, i still use scales and measuring cups after 40 years of diabetes. like gomer said, there are many good books out there. i can`t give you any better advice than gomer has already.
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  #8  
Old 03-24-2012, 12:15 PM
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BlessedWyoMom BlessedWyoMom is offline
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blessed mom, i still use scales and measuring cups after 40 years of diabetes. like gomer said, there are many good books out there. i can`t give you any better advice than gomer has already.
We will probably use our nutrition database scale and measuring cups mrore when we start counting carbs for his insulin dosing. Since his diagnosis is so new, we are only basing his insulin dosing on his blood sugar before he eats and trying to have consistent carb counts during each meal (which is hard with a 9-yr-old). Once we start carb counting, we'll dose based on the correction for his blood sugar, as well as the number of carbs he'll be consuming.

You probably know more about all of this than I, but I don't think I was very clear in my other response.
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  #9  
Old 03-24-2012, 12:22 PM
gomer gomer is offline
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MDI is a good routine. I use vials & syringes for my Lantus (basal) and a Humalog pen for meals, corrections etc. Took an overdose of Humalog one time, never again.....Ha ha. (pens are EASY & Convenient, so easy a CHILD can do it..........sorry could not resist!)

MY endo gave me a complex formula for figuring corrections, I told him I used an easier way. I simply figured out how much 1u of humalog would lower my BG. I under correct just a little so I don't go too low. A lot easier sometimes to correct in stages if it get very high.

&mom... remember he is still a kid and can do almost anything his classmates do, that includes CAKE and Ice Cream as well. (with a little insulin to cover it) There is no reason he should miss out on things his peers do.

Gomer Sir Falls-a-lot.
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  #10  
Old 03-24-2012, 04:46 PM
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BlessedWyoMom BlessedWyoMom is offline
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Quote:
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&mom... remember he is still a kid and can do almost anything his classmates do, that includes CAKE and Ice Cream as well. (with a little insulin to cover it) There is no reason he should miss out on things his peers do.

Gomer Sir Falls-a-lot.
Totally agree. The Barbara Davis Center is in the process of calculating his insulin/carb ratio to be able to cover both for meals and for fun treats. I think that life will get much easier when we finally have that ratio. He has adjusted amazingly well and I don't think this will change the course of his life one bit.
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