Been Hot and I’ve Been Busy

I have not wrote in a long
time and I am sorry for that. I have been really busy and it’s been
so hot! The other day was 95 degrees Fahrenheit (35 Celsius)! It’s
been making me so tired, I feel so heavy, sluggish. Sometimes I get a
pain in the tops of my hands between each tendon and sometimes I can
barely keep my balance. I can feel that I am way worse physically now
than I was a couple months ago, amazing.

As far as being busy; On
April 22 I gave an hour and a half long lecture to first year
Occupational Therapy students (about Multiple Sclerosis and what
textbooks don’t/can’t teach you about patients) at Loma Linda
University. It went well, though, as I spoke I realized what I wished
I would have included in my talk and Power Point presentation. Now I
know how to improve my talk so, next time!

I have also been preparing
for a… “relocation” to somewhere much cooler than Southern
California but I will talk about that more later!

I also did another round of
IVIG the other day, it went well, it was just long as always. We
figured out what was wrong with the pump so we were able to use that
instead of using gravity so it went a little faster than before.

I will post again soon, it’s
just been so hard to get anything done lately thanks to the heat.
Stay cool!

7 thoughts on “Been Hot and I’ve Been Busy

  • May 5, 2014 at 2:05 pm
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    I have the pain on the top of my hands and don't know how to explain it except for saying it feels like someone is standing on my hands. Maybe it is the tendons.

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  • May 6, 2014 at 2:46 am
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    That sounds too nice, FLAT, spread out, while mine (and probably yours) is more like very direct, precise, spots close in between my tendons on the tops of my hands.

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  • May 13, 2014 at 9:03 pm
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    Im over in Cathedral City Matt. I totally get the heat and the fatigue, I would jump in my pool but its too cold. LOLOL.

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    • May 21, 2014 at 12:31 am
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      I WISH I had a cold pool to jump into haha! I get in the shower and slowly turn it all the way cold, if it's a gradual temperature drop I like it but SUDDEN hurts!

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  • November 29, 2014 at 12:28 am
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    I'm new here ,
    I accidentally find you on Facebook, and I was amazed. I'm from Palm Springs originally, and I live in Minnesota with a cold kills

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  • November 29, 2014 at 12:35 am
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    I stumbled across your page by accident as a result of finding your YouTube (also by accident ). I'm amazed .

    I'm originally from PS- living in MN.
    I read that you like the cold. Might be a bit differnt once it's -60.

    Oh wow though, you bring hope .
    I had no idea about my "MS" until I lost all sensation in my face (from tingling to no sensation )… After the body Rush and vertigo – the fingers, toes, feet and hands that were ice cold and a torso hotter than hades . The itching too 🙂 I realized "hey I haven't been able to remember sh** in over a year ." Basic , stuff . Things from yesterday, and then I didn't know when yesterday was, if something it happened yesterday or the day before or last Monday. I also couldn't come why was using words wrong- I find myself irritated and very upset, and it was getting to be too much. I was having a "flareup" and it was terrible, I didn't know not to drive. The doctors and your cousin at work seem pretty hilarious, however the graduates we get from the bottom of the classes on the East Coast end up here in Northern Minnesota. Not only did look at the lesions in my brain and not recognize them( the demyelination), but I was forced to switch neurosurgeons and other doctors just to find one that actually knew what multiple sclerosis was.

    I've never been into blogging, but I'll sure be checking up on yours. Thank you so much for listing your experiences, maybe when I can move back out there, I'll ask you who that Dr. was in Palm Springs you saw, what insight you have- thank you.

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    • December 2, 2014 at 4:45 pm
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      Palm Springs; so 120F to -60F lol, how is that? I DO love the cold, just not the wind, I seem to have developed Raynaud's phenomenon where my fingers basically get REALLY cold easily to the point that they feel like they are going to fall off even when I feel fine everywhere else. You will often see me walking around in jeans, a Tshirt, and GLOVES when it is 0 out. The other day was -24 with the windchill. I would have loved that if it was not for my stupid hands… I was looking at electric gloves because it's so bad…

      I understand the memory thing. I have sticky notes everywhere and so many reminders on my phone. Lots of little tricks to help me remember the dumbest things.

      The doctor in Palm Springs was just some dude selling alternative medicine, mainly LDN. Some people swear by it but it did nothing for me. I can recommend better doctors more in the Riverside area. GOOD LUCK!

      Reply

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