Aa
Back from land of missing :)
HI all!
Been forever since I posted.... Been doing pretty good. Still working the part time job, almost a year now, tho its getting more and more stressful because I keep getting pulled into other people's problems and projects.
Had my second go round with the MS Hug on Friday night. Actually had two visits in one night... second woke me up about 4 am and lasted probably close to 90 minutes, was just beyond words to describe how painful. Visiting the primary doctor today to talk about some meds that might help when the monster visits. I have baclofen, but that does nothing.... I take LDN, so can't take most of the painkillers, had a bad experience with flexerell back in early days of MS diagnosis, it actually caused my legs to lockup even worse. He had mentioned valium which I was not in favor of, but after Friday, considering it....
So, when I post last.... think when the nightmare with my mother began after her strokes last summer. We moved her up here, but I could not take care of her, so we went looking at nursing homes and she picked out a place she liked that is still fairly close by. She is on a downhill slide, which might be adding to stress, she forgot my oldest brother had passed and the other day she thought the home had taken the glass out of the windows and wanted to know if I was picking my brother up from school (really ironic, I'm the youngest)... But she is in a safe place that is well run and they keep her busy and active, so all things considered, its about as good as it could be...
Biggest news... my baby girl (okay, she's 22), is on Semester at Sea voyage, in Italy right now! Was a bit of a financial strain, but its a once in a lifetime trip for her, so my husband said just take the extra student loans and give her the experience. Exciting part for me, I'll be meeting her in London on August 22nd and we're heading to Ireland for a 10 day road trip. Anyone here from Ireland!??
I posted on another thread, had my MRIs earlier this year, still no lesion progression, so something is working! Existing lesions keep finding new ways to be a pain, but I am not complaining, I'm thankful there is no lesion progression.
Do have a question for the ladies, so men look away now.... :) I've noticed that right before I get my period, I have the worst expression of symptoms. The fatigue doesn't surprise me, understand the body temp rises just slightly and there is the hormone shift. But, then I have more of muscle issues, crazy part, its more torso related. The MS hug was the worst on Friday and not sure that was coincidence or not. Just curious if any other women here have more problems right before their periods start.
I hope everyone is doing well!!! Reading thru posts now and catching up with new members and what everyone has been up to!! And sorry for being MIA so long :(
Hugs,
Jen
Been forever since I posted.... Been doing pretty good. Still working the part time job, almost a year now, tho its getting more and more stressful because I keep getting pulled into other people's problems and projects.
Had my second go round with the MS Hug on Friday night. Actually had two visits in one night... second woke me up about 4 am and lasted probably close to 90 minutes, was just beyond words to describe how painful. Visiting the primary doctor today to talk about some meds that might help when the monster visits. I have baclofen, but that does nothing.... I take LDN, so can't take most of the painkillers, had a bad experience with flexerell back in early days of MS diagnosis, it actually caused my legs to lockup even worse. He had mentioned valium which I was not in favor of, but after Friday, considering it....
So, when I post last.... think when the nightmare with my mother began after her strokes last summer. We moved her up here, but I could not take care of her, so we went looking at nursing homes and she picked out a place she liked that is still fairly close by. She is on a downhill slide, which might be adding to stress, she forgot my oldest brother had passed and the other day she thought the home had taken the glass out of the windows and wanted to know if I was picking my brother up from school (really ironic, I'm the youngest)... But she is in a safe place that is well run and they keep her busy and active, so all things considered, its about as good as it could be...
Biggest news... my baby girl (okay, she's 22), is on Semester at Sea voyage, in Italy right now! Was a bit of a financial strain, but its a once in a lifetime trip for her, so my husband said just take the extra student loans and give her the experience. Exciting part for me, I'll be meeting her in London on August 22nd and we're heading to Ireland for a 10 day road trip. Anyone here from Ireland!??
I posted on another thread, had my MRIs earlier this year, still no lesion progression, so something is working! Existing lesions keep finding new ways to be a pain, but I am not complaining, I'm thankful there is no lesion progression.
Do have a question for the ladies, so men look away now.... :) I've noticed that right before I get my period, I have the worst expression of symptoms. The fatigue doesn't surprise me, understand the body temp rises just slightly and there is the hormone shift. But, then I have more of muscle issues, crazy part, its more torso related. The MS hug was the worst on Friday and not sure that was coincidence or not. Just curious if any other women here have more problems right before their periods start.
I hope everyone is doing well!!! Reading thru posts now and catching up with new members and what everyone has been up to!! And sorry for being MIA so long :(
Hugs,
Jen
Hi you, it is so nice to see you back. We have missed you .
I understand about the working thing, I retired because of the fatigue. So, I get that part time thing.
Doing pretty well, have some more things coming up, and I'm sure you do too. !!
((HUGS)) to you,
and a gently one to boot
Candy
I understand about the working thing, I retired because of the fatigue. So, I get that part time thing.
Doing pretty well, have some more things coming up, and I'm sure you do too. !!
((HUGS)) to you,
and a gently one to boot
Candy
Well least I know I'm not nuts thinking my period makes things worse... its actually my husband who pointed that out :)
For the MS Hug, my primary (who is the worlds most wonderful sweetheart of a guy), gave me valium and tramadol to try. He printed out order and max I can take. He said to even crush or chew one of the valium and let it absorb under the tongue, will make it effective within minutes. So least we have something, tho I wish it was more to prevent it from ever happening again, but better to have something then to go thru that again for so long.... and even up til the last few times, my torso still felt tight and sore. I joked I felt like I ran a marathon and hubbie said those muscles did... was more work and exertion they should have in a month!
Would say I hope I don't have to let you know how they go, but figure sooner or later the bugger will rear its head again, so will update how it goes.
Shell - I'm only working part time, could not handle full time. Wish I could, but even half days 4 days a week kick my butts some week, especially when we have the kind of crazy heat we've had on the east coast. So how have you been!? I have to go back and read thru updates from the last 6 months :)
Hugs,
Jen
Hi Jen!
I hope the doctor gives you something to simmer that hug - 90 minutes is a long time to deal w/that tightening pain. It's easier to manage when it's grabby (still hurts), but steady pain like that will beat you up good.
I'm sorry to hear of your Mom's downturn, but happy to know she is in a good place. Oftentimes people wait til it's too late, and their loved ones will have nothing to do w/a home. So, like you say, she is safe there and I wish you good days with her, ones you can cherish forever.
What an exciting time you are set to have in your travels. I thought we did have a member from Ireland, but it's been awhile so I'm forgetting.
Congratulations on your ability to keep on working, I'm sure you will find a way to keep the stress to a minimum, and please do stay on and let us know what you've found to help the MS hug - especially since you are on LDN which limits your options.
Enjoy this cool day today......aaaaah, it actually feels cold! lol
Welcome back ((((painless hugs)))
shell
I hope the doctor gives you something to simmer that hug - 90 minutes is a long time to deal w/that tightening pain. It's easier to manage when it's grabby (still hurts), but steady pain like that will beat you up good.
I'm sorry to hear of your Mom's downturn, but happy to know she is in a good place. Oftentimes people wait til it's too late, and their loved ones will have nothing to do w/a home. So, like you say, she is safe there and I wish you good days with her, ones you can cherish forever.
What an exciting time you are set to have in your travels. I thought we did have a member from Ireland, but it's been awhile so I'm forgetting.
Congratulations on your ability to keep on working, I'm sure you will find a way to keep the stress to a minimum, and please do stay on and let us know what you've found to help the MS hug - especially since you are on LDN which limits your options.
Enjoy this cool day today......aaaaah, it actually feels cold! lol
Welcome back ((((painless hugs)))
shell
So glad you dropped in and gave us the update!
Congrats on the no lesion progression! Something is working! Hooray!
And your "baby" (LOL) on a sea voyage in Italy! How wonderful! It's an experience she will never forget.
I'm definitely in my perimenapausal stage where my period can last from 11 to 18 days only to find it back again a week later. Like this month in July, I've had it from July 5th to 10th (odd for the schedule its been on for a year) and now again on July 24th. I have noticed that my fatigue and pain issues are exaggerated during these times. I have no idea if they work together or not, but I can relate somewhat.
Have fun and a safe trip to London! So richly deserved I'm sure!
Keep us in the know!
Lisa
Congrats on the no lesion progression! Something is working! Hooray!
And your "baby" (LOL) on a sea voyage in Italy! How wonderful! It's an experience she will never forget.
I'm definitely in my perimenapausal stage where my period can last from 11 to 18 days only to find it back again a week later. Like this month in July, I've had it from July 5th to 10th (odd for the schedule its been on for a year) and now again on July 24th. I have noticed that my fatigue and pain issues are exaggerated during these times. I have no idea if they work together or not, but I can relate somewhat.
Have fun and a safe trip to London! So richly deserved I'm sure!
Keep us in the know!
Lisa
COMMUNITY LEADER
Hey babe,
The holiday sounds good, have fun!
A while ago there was a few questions about menstral and sx's getting worse, so your definitely not alone there. I personally haven't noticed anything different prior, and apart from higher levels of fatigue than my norm during, mine are still exactly the same as when they first started. I'm not even peri-menopausal yet, which is kind of surprising considering my mum was already at menopause by my age.
Cheers.........JJ
The holiday sounds good, have fun!
A while ago there was a few questions about menstral and sx's getting worse, so your definitely not alone there. I personally haven't noticed anything different prior, and apart from higher levels of fatigue than my norm during, mine are still exactly the same as when they first started. I'm not even peri-menopausal yet, which is kind of surprising considering my mum was already at menopause by my age.
Cheers.........JJ
Welcome back Jen!
I'm bumping this with barely a comment because I haven't the time to post at this very moment, and so it stays on the first page so I, and others can respond to it in good order! It's been awhile! Be back at you in a jiffy!
-shell
I'm bumping this with barely a comment because I haven't the time to post at this very moment, and so it stays on the first page so I, and others can respond to it in good order! It's been awhile! Be back at you in a jiffy!
-shell
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