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    I know that feeling nuthatch:

    “... The goodbyes are hard and the house is sadly quiet now. I'm in recovery mode.”
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    HORRAY FOR JEANIE’S HARD WORK AND PROGRESS

    I swam 1/2 mile today Nd walked 6 minutes. In R2D2 most of the resto for he day.
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    I swam 1/2 mile this morning. Rested. Cooked a...

    I swam 1/2 mile this morning. Rested. Cooked a salad and finished up the dinner’s walnut encrusted flounder, which was tasty. Lied down and listened to a meditation that usually falls into a brief...
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    These are the moments I live for: seeing bright,...

    These are the moments I live for: seeing bright, happy and loved child.
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    Right now, I am truly suffering, I see that...

    Right now, I am truly suffering, I see that things could be better in awhile. But, it makes me sad I have little to offers BT right now. What I can, I will though.

    I am not at deaths, door, so if...
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    I swam every day except IVIG day. Today I swam 20...

    I swam every day except IVIG day. Today I swam 20 minutes due to some problems. Hoping for full swim in a.m...
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    Continue to suffer, but see possible light at the...

    Continue to suffer, but see possible light at the end of the tunnel. Should know in 3 or 4 days.
  8. Love this quote, and the devil wears Prada...

    Love this quote, and the devil wears Prada meme!!!

    Happy birthday Laz
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    IVIG all day today. Been suffering this week....

    IVIG all day today.
    Been suffering this week. Not much presence on line...
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    New genome testing technique to differentiate ...

    New genome testing technique to differentiate several diseases from each other: CMT, SPS, Dystonia, etc.
    ...
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    I use the Drive rollator. It has hand brakes. ...

    I use the Drive rollator. It has hand brakes. Its easy to stash in teh car. And it has a seat that can stash stuff inside of it.
  12. Family coming in for the weekend.

    Family coming in for the weekend.
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    Today I swam 1/2 mile. Yesterday, did I...

    Today I swam 1/2 mile.
    Yesterday, did I mentioned that I used hedge clippers and clipped some of the hedges, by sitting on my rollator

    I want to try that again, maybe today depending.
  14. THank you!!!

    THank you!!!
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    Thinking of getting a Roomba for the days my...

    Thinking of getting a Roomba for the days my housekeeper angel does not come to help out, to keep the crumbs off the floor in kitchen and dining room.

    Opinions? My eldest swears by Roomba.
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    Swam today 1/2 mile. 50F air Walked for 9...

    Swam today 1/2 mile. 50F air

    Walked for 9 minutes with rollator, mostly outside, the only place I feel normal.
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    Does anxiety keep you up Howie?

    Does anxiety keep you up Howie?
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    That def counts Jeanie!!! Keep us posted on th...

    That def counts Jeanie!!! Keep us posted on th type of exercise you do?

    No swim today: It was 46F out.
    I did get in a sum total of 9 minutes rollator, but most of the day is on the wheelchair....
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    Fantastic numbers agate! I doubt I do that many...

    Fantastic numbers agate! I doubt I do that many steps....I am in awe of you....
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    Will treat the problem with Motegrity and Miralax...

    Will treat the problem with Motegrity and Miralax daily.
    It’s a hard problem, unpredictable urgency creates going out of the house difficult. One must also stop the meds a few days before the IVIG...
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    Today I swam 1/2 mile in teh rain, but it was 65F...

    Today I swam 1/2 mile in teh rain, but it was 65F air and 87F water, so it was fine.
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    A useful Personal Blog on living with SPS......

    A useful Personal Blog on living with SPS...
    https://www.iowastatedaily.com/politics/iowa-state-student-talks-healthcare-issues/article_a86361e0-43cd-11ea-8460-4349801478d3.html
  23. https://www.iowastatedaily.com/politics/iowa-state...

    https://www.iowastatedaily.com/politics/iowa-state-student-talks-healthcare-issues/article_a86361e0-43cd-11ea-8460-4349801478d3.html
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    It’s possible that something that is non asthma is triggering asthmatic reaction. Like when I was dealing with sarcoidosis of the lungs, it triggered asthma. Same with pneumonia.
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    Keep on Moving: February 2020

    MS creates some real challenges to keep on moving. It helps to inspire each other on how to find ways to move.

    Did you stretch in your bed, swing your arms, roll side to side today? Or perhaps...
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    I swam 1/2 mile today, then cooked a yummy dish....

    I swam 1/2 mile today, then cooked a yummy dish. My friend helped toward the end when the leg got wonky. Resting for a while. If it resolves, will do some low energy laundry. The house is set up for...
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    The test yesterday came out normally, to the...

    The test yesterday came out normally, to the surprise of the GI doc.
    Thus, my muscles in the lower GI tract are communicating and acting together synchronously////
    Thus, as had been assumed all...
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    Nice to have doctors, doctoring the way we all...

    Nice to have doctors, doctoring the way we all wish for :)
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    Thank goodness you are okay Jeanie...

    Thank goodness you are okay Jeanie...
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    I swam a half mile. Rested. Getting ready the...

    I swam a half mile. Rested. Getting ready the infusion bags etc....
  31. What avenues will you explore Laz?

    What avenues will you explore Laz?
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    Tomorrow is IVIG all day... Then The next day is...

    Tomorrow is IVIG all day...
    Then The next day is the anal anomoatry.—- a 4 hour procedure: Mostly getting ready is what they tell me. The doc stuff is actually just about an hour. I think they...
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    Have you seen your internist? It might be...

    Have you seen your internist? It might be something underlying that has little to do with MS, but is worsening your MS symptoms. I hope you do go in and talk.
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    Virginia, what do you think is happening? Or is...

    Virginia, what do you think is happening? Or is it random MS fatigue stuff?

    I swam 1/2 mile today, got help cleaning up my side dish for dinner. Lying down for a couple of hours.
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    Hebrew is a snap to read, despite different...

    Hebrew is a snap to read, despite different letters, and reading right to left. It pretty much reads exactly how it’s spoken.
    Japanese is easy to learn to speak, but I didn’t try to learn to read...
  36. I wonder if Swank was onto something? You recall...

    I wonder if Swank was onto something? You recall his hypothesis, and then diet, was that lipids leaked out of the capillaries (?) in the CNS and that it caused inflammation and attack of normal CNS...
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    Sweet photo :)

    Sweet photo :)
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    Swam 1/2 mile, cooked a homemade creamy lentil...

    Swam 1/2 mile, cooked a homemade creamy lentil soup, will rest now. Decided against surfing tomorrow: too much other stuff going on this week, want to get a little stronger....
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    Swam 1/2 mile this morning. 55F air, 86F pool....

    Swam 1/2 mile this morning. 55F air, 86F pool. Should be warmer tomorrow.
    Legs are spastic today ...
    Friends want to surf Saturday
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    Yes, it def rings a bell with me ANN...the whole...

    Yes, it def rings a bell with me ANN...the whole day is like that: Certain times of day, gotta get the stuff done before the symptoms crash in.
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    My sister also takes some sips of vodka along...

    My sister also takes some sips of vodka along with her inhalers: it settles her down, as anxiety about not breathing can worsen her attack. I dont know if there is science behind that though.

    Good...
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    Albuterol made my heart race. So I switched to...

    Albuterol made my heart race. So I switched to Xopenex: Perfect. Now it comes in a generic, but I cannot recall its name. WOrks great. Its a rescue inhaler I use it daily with my Spiriva Respimat and...
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    SPS has been kicking my butt, but I still swim...

    SPS has been kicking my butt, but I still swim nearly every day. Then rest....
    It is so hard to cope with such remarkable pain and loss...Trying hard. Embroidery takes my mind off of the negative...
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    You are downright Heroic Agate! I will try harder...

    You are downright Heroic Agate! I will try harder :)
    40F outside, think I will skip the morning swim— th air is just too cold to get out of the pool and into the house...maybe walk more, like agate....
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    Swam in the cold...cooked. Resting...

    Swam in the cold...cooked. Resting...
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    I am sad to hear of your loss.

    I am sad to hear of your loss.
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    Two days since Laz posted here... Too soon to...

    Two days since Laz posted here...
    Too soon to worry?
  48. I might like to drive it, but at slow speeds,...

    I might like to drive it, but at slow speeds, like the speed of a normal walker in a store. Not at 24 mph!
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    My DH was out of town this morning, back later...

    My DH was out of town this morning, back later today. My friend spent the night just in case, and she consented to supervise a swim. 1/2 mile. It will be very chilly tomorrow, and might not swim...
  50. The Donut Hole is closing, another gap opens up without Congressional Action

    https://www.nytimes.com/2020/01/17/health/medicare-drug-costs.html
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    I am starting on this kit:...

    I am starting on this kit:
    https://www.amazon.com/gp/product/B07WMM3DTS/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

    Its cheap enough. And, if I continue to like it, I can branch out, and...
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    Today I started to learn to em broidery from a...

    Today I started to learn to em broidery from a kit I bought on amazon.
    I was pleasantly surprised to see how my main receded and my constant worry stream of thoughts disappeared. This may prove to...
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    You got a lot done Virginia :)

    You got a lot done Virginia :)
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    My friend has amazing skin, but she grew up in a...

    My friend has amazing skin, but she grew up in a cold climate with no sun. Mine is mottled from sun
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    Also, I should add, my asthma is only accompanied...

    Also, I should add, my asthma is only accompanied by wheezing when it gets really bad. Otherwise, it is a constant hacking cough.

    The sarcoidosis, which is stable, creates a feeling of wet mucus...
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    I am so grateful for your care and concern. It...

    I am so grateful for your care and concern. It warms my heart that you think about how to help me. The main help I need now is rides, occasional help cooking, and your ever present kindness.
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    My immunologist puts me on a short course of pred...

    My immunologist puts me on a short course of pred after these types of symptoms and history and it clears up the coughing after a bout of antibiotics doesnt do the trick.

    You have HBP? Some meds...
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    I swam 1/2 mile 28 minutes. During the day, I...

    I swam 1/2 mile 28 minutes. During the day, I walked 7 minutes straight, and then in fits and starts to get the dinner cooked etc. Lots of time lying down.

    Tomorrow should be less cooking...
  59. Disability Disaster in the making: Law Proposal by politicians

    https://www.nytimes.com/2020/01/16/opinion/trump-disability.html?action=click&module=Opinion&pgtype=Homepage
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    You all have been busy :) So jealous of cat...

    You all have been busy :)
    So jealous of cat people. They look like a perfect pet. Were it not for allergies/asthma to indoor pets, even birds, they would ge a perfect solution to loneliness. And...
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    IVIG today. All day long...

    IVIG today. All day long...
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    Is there a monthly fee, or just a fee to “buy” the audible? And do you have to listen to it on your iPad?
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    How are you feeling this morning Virginia?

    How are you feeling this morning Virginia?
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    Agate, how do you get audio books with zero sound...

    Agate, how do you get audio books with zero sound effects. Just reading. Idon’t mind voice inflection, but do not want music or sound effects.
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    I was so mad that they made you wait so long to...

    I was so mad that they made you wait so long to change you.
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    I curse physics when this happens. It’s bad enough to be so ill, it only seems fair that physics would occasionally cut us a break and not follow its own rules.
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    The politics in our nation is so frightening, and...

    The politics in our nation is so frightening, and vile right now, that I limit mylsef to reading the news in the morning, and then nothing else.
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    Today I swam 1/2 mile 25 minutes 54F air, 86 pool.

    Today I swam 1/2 mile 25 minutes 54F air, 86 pool.
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    I stopped as soon as I was able to start to swim...

    I stopped as soon as I was able to start to swim again.
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    Good visit with neuro. He has increased ativan....

    Good visit with neuro. He has increased ativan. LEts see how that does.

    Today, urologist squeezed me in an i foun a ride with a good friend. They insisted I see the doc, not just come in and get...
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    Oh Nuthatch— how truly awful for you...
    Do you think you had the flu that morphed into pneumonia, not an uncommon course...regardless, it must be nice to be home....So sorry you have been up against...
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    I have one of these that I used for my arms for...

    I have one of these that I used for my arms for elevating my heart rate, before I was able to swim at all. It was helpful, but awkward..better than nothing though.
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    This looks like the one I bought for my arms when...

    This looks like the one I bought for my arms when I wasn’t able to even swim, in order to elevate heart rate. Its awkward for arms, but better than nothing...
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    Virginia, that’s a lot of activity, at least from my armchair :) I gave up makeup decades ago—- part of my feminist statement I guess—fixing my hair means I put my comb through it. :)....oh well, ......
  75. Thread: Undecided

    by Sunshine
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    Yes to PT— it def helped me. You can also get in at home if necessary.

    I don’t know enough about Cellcept...Ocrevus and Rituxan are worth asking about though.
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