Aa
Monday, Monday!
How are your weeks shaping up? For those who've had a time change, I hope it was easy enough to get up on a darker morning! Here in Europe, the clocks don't "spring forward" until 29 March so there's an extra hour between ourselves and North America at the moment. And for folks down under, I understand your clocks aren't set back until 5 April. We humans have managed to make this quite complicated for ourselves!
I've my usual three tutoring sessions this week with three lovely older gentlemen, but everything else has been finished up—my knitting, my monthly injection, my spring cleaning. Just enjoying the longer evenings!
I've my usual three tutoring sessions this week with three lovely older gentlemen, but everything else has been finished up—my knitting, my monthly injection, my spring cleaning. Just enjoying the longer evenings!
Congrats on being discharged! I know getting back home was such a relief to me as well. Auditory evoked potentials is a new one on me. I had to look it up! The article on wikipedia I found wins the 'Today in Odd Medical Nomenclature Award' for introducing me to a condition known as Ondine's Curse—which sounds rather Shakespearian!
Looking into LDN is a personal choice, but the research is very limited. http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone If a doctor mentioned it to me, I'd have serious questions for him and, if I'm honest, my opinion of him would go down.
Looking into LDN is a personal choice, but the research is very limited. http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone If a doctor mentioned it to me, I'd have serious questions for him and, if I'm honest, my opinion of him would go down.
PS Thank you for everyone's well wishes, I really couldn't survive this ordeal without my cyber buddies.
Take care
Poppy
Take care
Poppy
I was finally discharged from hospital today, with a plan going forward. First up is a repeat spine and brain MRI, followed by auditory evoked potential testing and neuropsychological testing. The latter two should have been done months ago.
The Physician I had was lovely and although not an MS specialist, seemed to know a fair bit. He said he thinks I'm on the right track with my MS thoughts and sees me being diagnosed with it in the future.
He also said I should look into LDN, which I will do, and see whether I can get a 'therapeutic trial' of the MS drugs. I'm a bit doubtful whether I'll be able to do this but will also look into it.
As far as how I feel, I still have quite a lot of pain and am exceedingly tired but am really pleased to be home. As a short walk in the hospital yesterday didn't end well (I just had to have a decent coffee), I will be taking it very quiet this weekend and make sure my kids run around after me. :-)
The Physician I had was lovely and although not an MS specialist, seemed to know a fair bit. He said he thinks I'm on the right track with my MS thoughts and sees me being diagnosed with it in the future.
He also said I should look into LDN, which I will do, and see whether I can get a 'therapeutic trial' of the MS drugs. I'm a bit doubtful whether I'll be able to do this but will also look into it.
As far as how I feel, I still have quite a lot of pain and am exceedingly tired but am really pleased to be home. As a short walk in the hospital yesterday didn't end well (I just had to have a decent coffee), I will be taking it very quiet this weekend and make sure my kids run around after me. :-)
COMMUNITY LEADER
Gentle HUGS babe, I really hope you are now on the mend!
Hugs.........JJ
Hugs.........JJ
Best of luck transitioning to the post-rehab phase. You'll be in good shape with that pup of yours! I agree, nothing seems quite so daunting when there's laughter around.
Taking up tutoring this past year has really enriched my life. I started off very slowly (one day a week per 4-week session) and have worked up to three simultaneous sessions. Dare I say MS has been an asset? Since I work with the elderly, I can empathise with vision problems, balance and gait issues, struggles to concentrate, etc. Luckily mine have resolved over time, but I do think it provides a lot of insight that's made my tutoring a little more innately compassionate and patient than perhaps some.
As for the knitting, I picked up my first needles barely a year ago. And boy it was an exercise in frustration at the beginning! But to my surprise, I stuck with it (I can have my teddy-thrown-from-the-pram moments). Again, the videos for me were key. And, repetition, repetition, repetition. Thank you for the complement!
Taking up tutoring this past year has really enriched my life. I started off very slowly (one day a week per 4-week session) and have worked up to three simultaneous sessions. Dare I say MS has been an asset? Since I work with the elderly, I can empathise with vision problems, balance and gait issues, struggles to concentrate, etc. Luckily mine have resolved over time, but I do think it provides a lot of insight that's made my tutoring a little more innately compassionate and patient than perhaps some.
As for the knitting, I picked up my first needles barely a year ago. And boy it was an exercise in frustration at the beginning! But to my surprise, I stuck with it (I can have my teddy-thrown-from-the-pram moments). Again, the videos for me were key. And, repetition, repetition, repetition. Thank you for the complement!
Hey JJ that's so not fair that you are getting cooler weather!
We are one of those lovely states that don't like to disrupt the cows with having daylight savings or maybe it's more that a bunch of idiots make the decision that we not participate in daylight savings. Run for your lives as their really are crazy people everywhere!
Hugs,
Karry.
We are one of those lovely states that don't like to disrupt the cows with having daylight savings or maybe it's more that a bunch of idiots make the decision that we not participate in daylight savings. Run for your lives as their really are crazy people everywhere!
Hugs,
Karry.
I am having a busy week getting back to some sort of normal after my extended rehab hospital stay. It's very easy to decondition rapidly when you've spent such a long period in a bed or a wheelchair so now I have to work extra hard if I want to get back to where I want to be. I've noticed I've gained some things in rehab and lost some but all up I'm doing much better than I ever thought.
My little puppy just turned 12 months old & has brought me so much happiness and load of laughter which I think is seriously underated. I truly believe there is no better medicine than a pet and a good laugh.
I'm feeling a tad better this week as so far I don't have a urinary infection so things are looking up. :) I will be off for Rituximab in a couple of weeks so I should have less fatigue after that.
JB, good luck with the new neuro on Friday.
Corrie, I hope you get your results soon and get some answers.
Poppy, sending gentle hugs your way.
Alex, I really hope you can adjust to the PARP soon.
Immi, That is beautiful knitting! I have tried to knit a few times in life but it has always failed mainly due to my poor coordination. I just unwound the yarn of a scarf that I started a decade ago when I was having a sort out. It really didn't resemble something an adult had knitted :D so I have except my defeat and will not attempt again. I love the idea of tutoring and I think I would enjoy doing something like that.
Karen, I am not looking forward to the day menopause blesses my life as I have enough trouble with PMT. I hope the cramps settle for you soon.
Have a good week everyone!
Karry.
My little puppy just turned 12 months old & has brought me so much happiness and load of laughter which I think is seriously underated. I truly believe there is no better medicine than a pet and a good laugh.
I'm feeling a tad better this week as so far I don't have a urinary infection so things are looking up. :) I will be off for Rituximab in a couple of weeks so I should have less fatigue after that.
JB, good luck with the new neuro on Friday.
Corrie, I hope you get your results soon and get some answers.
Poppy, sending gentle hugs your way.
Alex, I really hope you can adjust to the PARP soon.
Immi, That is beautiful knitting! I have tried to knit a few times in life but it has always failed mainly due to my poor coordination. I just unwound the yarn of a scarf that I started a decade ago when I was having a sort out. It really didn't resemble something an adult had knitted :D so I have except my defeat and will not attempt again. I love the idea of tutoring and I think I would enjoy doing something like that.
Karen, I am not looking forward to the day menopause blesses my life as I have enough trouble with PMT. I hope the cramps settle for you soon.
Have a good week everyone!
Karry.
I hope the visit to the new specialist is productive! Fingers crossed.
Poppy, I'm so sorry you're in so much pain. I hope they're able to make you more comfortable and find some answers.
Karen, I'd be swooning over Monty Python-based knits as well! What a great gift! And yes, yak wool is the fibre world up-and-comer. You're ahead of the curve with that gift. Muskox (qiviut) wool as well, but it's soooo expensive! I hope the cold and cramps sort themselves out soon. Yeah, there's some sort of FTC violation going on with the misnaming of menopause.
Poppy, I'm so sorry you're in so much pain. I hope they're able to make you more comfortable and find some answers.
Karen, I'd be swooning over Monty Python-based knits as well! What a great gift! And yes, yak wool is the fibre world up-and-comer. You're ahead of the curve with that gift. Muskox (qiviut) wool as well, but it's soooo expensive! I hope the cold and cramps sort themselves out soon. Yeah, there's some sort of FTC violation going on with the misnaming of menopause.
Alex, we'll happily take your rain here in Oklahoma. It's finally raining today, the kind of rain that spring plants considering waking up, just love. But we need several days of it PLUS a biblical deluge or two over our metro reservoir, which is lower than is safe. And I have to listen to the silent (mostly) suffering of my sailor husband, who will not be having a racing season this summer because of the low water. :(
Immisceo - beautiful knitting! I never got the hang of it, cross stitching and other types of embroidery were and are, more my speed. But my friend keeps me in "stuff", with my last knitted/crotchet gifts being a spectacular pair of fingerless mittens in purple yak wool (not sure if the YAK was purple or if it was dyed later...she was a bit coy on that), and my very own crocheted Holy Hand Grenade of Antioch. I nearly swooned. :)
Feeling wobbly today - as in balance and gait feel wonkier than since I got over my last relapse. Getting over a bad head cold, and up half the night with cramps. (menopause had better get fully committed to the friggin' PAUSE part of it, or I'm going to have to have some SPEECH with...someone). And of course the time change helped none of this, and I was seriously dragging this morning, but I made it to work at a reasonable hour at least.
I had a reasonably good weekend otherwise, with some actual light walking that didn't wear me plum' out, and some crape myrtle pruning, which did. Also got some landscaping stone for a new flowerbed. And I took a LONG nap. I'm getting much better at naps. ;-)
So, just soldiering on... And I find I like the Monday roll call. :)
Karen
Immisceo - beautiful knitting! I never got the hang of it, cross stitching and other types of embroidery were and are, more my speed. But my friend keeps me in "stuff", with my last knitted/crotchet gifts being a spectacular pair of fingerless mittens in purple yak wool (not sure if the YAK was purple or if it was dyed later...she was a bit coy on that), and my very own crocheted Holy Hand Grenade of Antioch. I nearly swooned. :)
Feeling wobbly today - as in balance and gait feel wonkier than since I got over my last relapse. Getting over a bad head cold, and up half the night with cramps. (menopause had better get fully committed to the friggin' PAUSE part of it, or I'm going to have to have some SPEECH with...someone). And of course the time change helped none of this, and I was seriously dragging this morning, but I made it to work at a reasonable hour at least.
I had a reasonably good weekend otherwise, with some actual light walking that didn't wear me plum' out, and some crape myrtle pruning, which did. Also got some landscaping stone for a new flowerbed. And I took a LONG nap. I'm getting much better at naps. ;-)
So, just soldiering on... And I find I like the Monday roll call. :)
Karen
on thursday there is a neuro coming from out of town that I'm down to see so hopefully that will yield some answers. in the meantime its sleep, sleep and more sleep.
i just typed a whole lot and lost it!!! anyway I'm in hospital and not leaving without a diagnosis. drugged to eyeballs and have had so much pain i wish i was dead. been here since sat. pain is spinal, back and arm with some massive hug symptoms thrown in for good measure, especially when i get warm.
On Friday I see a new MS Logist, the will only be the second Ms logist that I have seen, In the past I saw way to many Neuro's to no avail.
I really hope to get some answers and maybe get kicked out of Limbo land
take care
JB
I really hope to get some answers and maybe get kicked out of Limbo land
take care
JB
Oh, Alex. I hope the adjustment period is over swiftly and that they're doing their job. Fingers crossed the rain lets up for you soon too!
Oh, I never could have gotten the hang of knitting before the internet age. I don't know anyone who knits, and reading knitting instructions is like reading Greek! Thank goodness for video instruction! And thank you for the compliment.
Oh, I never could have gotten the hang of knitting before the internet age. I don't know anyone who knits, and reading knitting instructions is like reading Greek! Thank goodness for video instruction! And thank you for the compliment.
What a beautiful shawl. I tried knitting but could not get the hang of it.
I am just working on my book.
I am getting used to the PARP inhibitor. I try not to throw up taking 8 pills twice a day. My stomach is uneasy and I am tired. I hope once I get used to it these symptoms subside. I have to get shipments every two weeks.
I am wishing for the rain to stop so my yard would dry out.
Alex
I am just working on my book.
I am getting used to the PARP inhibitor. I try not to throw up taking 8 pills twice a day. My stomach is uneasy and I am tired. I hope once I get used to it these symptoms subside. I have to get shipments every two weeks.
I am wishing for the rain to stop so my yard would dry out.
Alex
Ta for the compliment. I think I'd go barmy if my knitting abilities went away. It's like therapy!
I don't recall where in Australia you live, but on the chance it's one of the many places with insanely hot summers, I'm delighted to hear cooler weather is on its way!
I hadn't looked up that there are parts of Australia that don't partake in DST. There are little pockets in the US too, I believe. Working with older people, I've learned so much - for one, they recall that during World War II, Ireland and the UK observed 'double summer time'. I'm *still* not sure I understood the explanation of that one! But this article is blowing my mind a little! http://en.wikipedia.org/wiki/Australian_Daylight_Saving_Time.
Corrie, fingers crossed you get those results!
I don't recall where in Australia you live, but on the chance it's one of the many places with insanely hot summers, I'm delighted to hear cooler weather is on its way!
I hadn't looked up that there are parts of Australia that don't partake in DST. There are little pockets in the US too, I believe. Working with older people, I've learned so much - for one, they recall that during World War II, Ireland and the UK observed 'double summer time'. I'm *still* not sure I understood the explanation of that one! But this article is blowing my mind a little! http://en.wikipedia.org/wiki/Australian_Daylight_Saving_Time.
Corrie, fingers crossed you get those results!
COMMUNITY LEADER
Yep we humans manage but these time changes (day light savings) apparently really confuse the bl@@dy cows in Queensland so they don't partake lol
The shawls looks wonderful, i use to love knitting and cross stitch lol now i can't even sew on a button without needing half a dozen band-aids - darn tremor!
It's starting to cool down down under :D after Easter holidays i'll start believing winters on it's way.
Still dealing with moi at the moment, doing the best I can and nothing more!
Cheers.......JJ
The shawls looks wonderful, i use to love knitting and cross stitch lol now i can't even sew on a button without needing half a dozen band-aids - darn tremor!
It's starting to cool down down under :D after Easter holidays i'll start believing winters on it's way.
Still dealing with moi at the moment, doing the best I can and nothing more!
Cheers.......JJ
Gad, it was dark when I left for work this morning! :)
On the up side, it is still cooler than seasonal for us but I think I have finally adjusted and it doesn't feel so bad. At least it is warming up in the afternoons so that must mean spring is on its way.
Nothing on the go for me this week unless I actually get my nerve conduction study results. Either way, mid-week or so, I plan to call my neuro's office if I have not already heard back to see if they are in or not.
Happy almost spring everyone!!
Corrie
On the up side, it is still cooler than seasonal for us but I think I have finally adjusted and it doesn't feel so bad. At least it is warming up in the afternoons so that must mean spring is on its way.
Nothing on the go for me this week unless I actually get my nerve conduction study results. Either way, mid-week or so, I plan to call my neuro's office if I have not already heard back to see if they are in or not.
Happy almost spring everyone!!
Corrie
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