Aa
Rise and shine on this beautiful Monday. April Fools!
So what's happening with you all this week? Hope it's a good one.
ess
ess
Nice to meet you too. :) We seem to have started this journey about the same time. My presenting symptoms started in July 2011 and I went to the doctor in the fall 2011.
I totally get the difficulty with making in-laws understand. Gotta stick up for yourself and eventually they should get it. Can your husband help with that? My in laws had an especially hard time because my first set of doctor kept sending me to a psychiatrist. My new doctor has since explained to me that a fully dilated pupil in one eye can't ever be conversion disorder. They're still uncomfortable believing that doctors who said I was fine at the beginning could have been wrong. *sigh* It was the best money I ever spent though to go see a good MS specialist. I hope yours will have answers for you, too. Post back and let us know how it goes when you get in, ok?
I totally get the difficulty with making in-laws understand. Gotta stick up for yourself and eventually they should get it. Can your husband help with that? My in laws had an especially hard time because my first set of doctor kept sending me to a psychiatrist. My new doctor has since explained to me that a fully dilated pupil in one eye can't ever be conversion disorder. They're still uncomfortable believing that doctors who said I was fine at the beginning could have been wrong. *sigh* It was the best money I ever spent though to go see a good MS specialist. I hope yours will have answers for you, too. Post back and let us know how it goes when you get in, ok?
I asked the Dr early on, is this real...
the Dr stated " let me be clear these lesions are there and real, what problems will occur as a result no one knows"
I understand the emotional aspect of not getting the DX to maybe start DMD'S in the hopes of slowing things down,
Your friend
JB
the Dr stated " let me be clear these lesions are there and real, what problems will occur as a result no one knows"
I understand the emotional aspect of not getting the DX to maybe start DMD'S in the hopes of slowing things down,
Your friend
JB
I do think the lack of a dx makes it even more difficult. Not only can I not always do what I'd like, I fear that others are wondering if, well, since the doctors can't find anything wrong with me (at least, they can't name it), well.... Maybe I'm what, faking it? My mind wanders. NyQuil is a wonderful thing, isnt it?
Nice to meet you! :)
My journey officially started 15 months ago with an episode of Transverse Myelitis. I "improved" only to get new symptoms 7 months ago. Waiting to get in to my third neuro -- a MS specialist this time.
So, in the grand scheme of the MS world I'm a newbie! But, like you said, in the eyes of many of my family (ahem, in-laws) I've just been sick *forever* and shouldn't I be better by now? When I am having a good series of days, it's easy for them to pile a heap of responsibilities on me...they just don't get that it overwhelms my system.
Heck, I'm still working on accepting that myself! It's a difficult balance and I'm just now learning that I need to be better at standing up for myself. :)
My journey officially started 15 months ago with an episode of Transverse Myelitis. I "improved" only to get new symptoms 7 months ago. Waiting to get in to my third neuro -- a MS specialist this time.
So, in the grand scheme of the MS world I'm a newbie! But, like you said, in the eyes of many of my family (ahem, in-laws) I've just been sick *forever* and shouldn't I be better by now? When I am having a good series of days, it's easy for them to pile a heap of responsibilities on me...they just don't get that it overwhelms my system.
Heck, I'm still working on accepting that myself! It's a difficult balance and I'm just now learning that I need to be better at standing up for myself. :)
Supermum, I was trying to paint my daughter's fingernails yesterday with much the same result! Purple everywhere! LOL
I do a lot of my online stuff on an iPad because using a keyboard is really painful. But its pretty comical trying to watch me use a touchscreen! 9 times out of 10 I completely miss what I'm aiming to tap or my fingers do a double tap because of the tremors!
I do a lot of my online stuff on an iPad because using a keyboard is really painful. But its pretty comical trying to watch me use a touchscreen! 9 times out of 10 I completely miss what I'm aiming to tap or my fingers do a double tap because of the tremors!
Recovering from the weekend, plus have now developed a nasty sore throat, cough, & some sniffles. To-do list looks a lot like it has in recent weeks. No medical anything scheduled. Nancy's in Columbus this morning for her monthly RA infusion. Brilliant sunshine, but still crisp. Yeaterday's wind was biting, making sunshine deceptive. Track season; 1st event is tonight. Tim announced last night he'd done a mile in 4:50 in practice. He's really a sprinter, though.
Kyle, your new range sounds fabulous! I've been trying to convince my hubby that we need a double oven. Enjoy! :)
Sierra... I don't think we've met yet, but just wanted to say hang in there. I am very recently out of limbo and still have flashbacks of dealing with family when things weren't going well but I had no diagnosis. It's rough. A lot of times I think they just don't know how to deal with it the same as we don't know how to deal with how we're feeling. They'll hopefully come around. Have you been in limbo long?
This week is MRI week for me. I started my blood tests for that last week and have the pre-contrast allergy appointment this week. It's going to be a long one as they're **** an MRA as well at the same time thanks to the TN diagnosis this year.
Have a great week all!
Laura
Sierra... I don't think we've met yet, but just wanted to say hang in there. I am very recently out of limbo and still have flashbacks of dealing with family when things weren't going well but I had no diagnosis. It's rough. A lot of times I think they just don't know how to deal with it the same as we don't know how to deal with how we're feeling. They'll hopefully come around. Have you been in limbo long?
This week is MRI week for me. I started my blood tests for that last week and have the pre-contrast allergy appointment this week. It's going to be a long one as they're **** an MRA as well at the same time thanks to the TN diagnosis this year.
Have a great week all!
Laura
COMMUNITY LEADER
We are 'still' renovating, you see it all started with a new oven! lol
The kitchen was remodelled so my nice big new stainless steel oven could fit, which meant new benchtops, splash backs etc like most of the houses here in OZ, its open plan kitchen and family room. Its a big open space with cathedral ceiling and with remodelling the kitchen, it's meant the entire kitchen/family room needed repainting and that's what we started doing this Easter holiday.
I'm painting the doors and trims that surround, unfortunately I have 5 doors coming off this room and miles of trim to paint. Its taking me almost a day to get from one door to the next, so i'll probably still be painting by next Easter :o) Now the room isn't the problem, its that i'm slower than a snail trying to control the tremor whilst holding a paintbrush.
Now the really fun part is actually getting the paint on my intended target, not throwing paint all over the place, and aiming for the middle of the images i get. So it starts with a new oven, that's lead to lots and lots of work but also an abundance of laughter lol
Nothing will stop this little chicken from giving it a go!
Cheers.......JJ
psst.... dont buy a new over! rofl
The kitchen was remodelled so my nice big new stainless steel oven could fit, which meant new benchtops, splash backs etc like most of the houses here in OZ, its open plan kitchen and family room. Its a big open space with cathedral ceiling and with remodelling the kitchen, it's meant the entire kitchen/family room needed repainting and that's what we started doing this Easter holiday.
I'm painting the doors and trims that surround, unfortunately I have 5 doors coming off this room and miles of trim to paint. Its taking me almost a day to get from one door to the next, so i'll probably still be painting by next Easter :o) Now the room isn't the problem, its that i'm slower than a snail trying to control the tremor whilst holding a paintbrush.
Now the really fun part is actually getting the paint on my intended target, not throwing paint all over the place, and aiming for the middle of the images i get. So it starts with a new oven, that's lead to lots and lots of work but also an abundance of laughter lol
Nothing will stop this little chicken from giving it a go!
Cheers.......JJ
psst.... dont buy a new over! rofl
Happy April Fools Day!
Great news, my new oven arrived on Friday, just in time to save my Easter dinner! Kyle, you and I must be thinking on the same page because I too got a double oven, 5 burner stove top! The ham and bunny cake came out great :)
This week I have ane eye dr. appt. on Wednesday to check on macular edema. This is something they keep track of with Gilenya. Thursday is PT.
Saturday will bring everyone together to watch basketball Final Four... Go 'cuse!
Have a great week friends!
Deb
Great news, my new oven arrived on Friday, just in time to save my Easter dinner! Kyle, you and I must be thinking on the same page because I too got a double oven, 5 burner stove top! The ham and bunny cake came out great :)
This week I have ane eye dr. appt. on Wednesday to check on macular edema. This is something they keep track of with Gilenya. Thursday is PT.
Saturday will bring everyone together to watch basketball Final Four... Go 'cuse!
Have a great week friends!
Deb
Overdid it getting ready to host Easter, hosting Easter, then cleaning up Easter. Really in bad shape today.
You know the Health Page on Limboland where it talks about family not understanding when you have no diagnosis? Yeah.
Anywho, looks like a decent week ahead. Sunshine in the forecast here!
SSEP and EMG redux early Friday morning.
Off now to track down more coffee.... :)
You know the Health Page on Limboland where it talks about family not understanding when you have no diagnosis? Yeah.
Anywho, looks like a decent week ahead. Sunshine in the forecast here!
SSEP and EMG redux early Friday morning.
Off now to track down more coffee.... :)
Kyle, I want your kitchen....
This week is beyond crazy for me but I am startting today with a long overdue session with the massage therapist.
Tuesday I head to Baltimore to do grant reviews in person - and then that commitment for now will be done. The amount of time this has taken is incredible. I'm not sure that I will volunteer to do it again. I come back home Thursday, so it is a quick trip but enough free time to get a visit in with Ess.
Friday - normal work day and then it will be the weekend, again. There are lots of other things going on in the background so I know I absolutely will be needing the weekend to come in a hurry.
hugs to all! Laura
This week is beyond crazy for me but I am startting today with a long overdue session with the massage therapist.
Tuesday I head to Baltimore to do grant reviews in person - and then that commitment for now will be done. The amount of time this has taken is incredible. I'm not sure that I will volunteer to do it again. I come back home Thursday, so it is a quick trip but enough free time to get a visit in with Ess.
Friday - normal work day and then it will be the weekend, again. There are lots of other things going on in the background so I know I absolutely will be needing the weekend to come in a hurry.
hugs to all! Laura
Still waiting for my cookies, Kyle (grin).....
So drooling over it.........
The sun is out here, but rain predicted for rest of week.
I woke up with ON this morning, although suspected it yesterday, had to have help to get to my bedroom. My "down" week of feeling crappy before my next Tysabri appt next Monday.
KUB on Thursday and annual urology appt to make sure no new baby kidney stones lurking in the shadows
Then nothing until next week for medical appts.
Hoping everyone has a good week and fingers crossed and prayers for those with surgery and such this week.
So drooling over it.........
The sun is out here, but rain predicted for rest of week.
I woke up with ON this morning, although suspected it yesterday, had to have help to get to my bedroom. My "down" week of feeling crappy before my next Tysabri appt next Monday.
KUB on Thursday and annual urology appt to make sure no new baby kidney stones lurking in the shadows
Then nothing until next week for medical appts.
Hoping everyone has a good week and fingers crossed and prayers for those with surgery and such this week.
Ess - This one has 5 burners. There is a 17,000 BTU high torque burner and a center, oval burner which works with the included reversible grill/griddle! It's a good thing I don't have kids to put through school!
immisceo - When the fridge gets replaced I think I'll catch my breath for a while :-)
Kyle
immisceo - When the fridge gets replaced I think I'll catch my breath for a while :-)
Kyle
Morning all, Happy April Fools day. It is snowing here today, really coming down and this is no joke! Had enough of this weather already.
Kids last day of vacation here. Eye doc appt, orthodontist appy, and pediatrician for sick visit. The usual "schlepping" for me. Still w lot os r knee pain, but I will just take it slow and easy.
Tonight starts Lacrosse for one of my kids. This is a 3/4 day a week commintment. Not looking forward to it.
Tomorrow is my dads 81st bday. And the biggest news is my husband is FINALLY graduationg w his masters after 5 long years. He finished yesterday! Woohoo, been a long hard 5 years for him (and me). Best news.
Michelle
Have a good week all
Kids last day of vacation here. Eye doc appt, orthodontist appy, and pediatrician for sick visit. The usual "schlepping" for me. Still w lot os r knee pain, but I will just take it slow and easy.
Tonight starts Lacrosse for one of my kids. This is a 3/4 day a week commintment. Not looking forward to it.
Tomorrow is my dads 81st bday. And the biggest news is my husband is FINALLY graduationg w his masters after 5 long years. He finished yesterday! Woohoo, been a long hard 5 years for him (and me). Best news.
Michelle
Have a good week all
Over here it's more typical to have them separated completely (as in the hob/stovetop is built into the countertop with normal storage underneath and the oven and grill are built into cabinets about 5 feet off the ground. I love not having to always bend up and down just to get stuff out! Great for those low energy days.
Kyle, your kitchen looks great! Is this the finishing touch?
Kyle, your kitchen looks great! Is this the finishing touch?
Kyle, I'm totally dying with envy. Having 2 ovens beneath the stove top is such a great idea, and what's usually at the bottom, that basically useless drawer, is just a gatherer of crumbs and mess in my kitchen. Not to mention the really high-power burners on top. $$$ but I bet it'll be worth it.
I'm a huge foodie and love to cook. My guru was Julia Child, long ago, from her first books and TV series. I have every gadget out there and about 100 cookbooks, so I'm hopeless addicted. Oh well, keeps me out of bars!
ess
I'm a huge foodie and love to cook. My guru was Julia Child, long ago, from her first books and TV series. I have every gadget out there and about 100 cookbooks, so I'm hopeless addicted. Oh well, keeps me out of bars!
ess
Alex, that retreat sounds great! Enjoy your appointment-free week!
All the best for those having surgery in the near future in case you're not able to check-in next Monday.
All the best for those having surgery in the near future in case you're not able to check-in next Monday.
I have twenty paintings in the works with frames I made. I am going to a painting retreat at the beach Friday-Sunday. I have to have all my paintings done by the 11th because I am having surgery.
No medical appointments this week a miracle!
Alex
No medical appointments this week a miracle!
Alex
This week I have to get all medical appointments completed for Rotator Cuff & torn bicep surgery on April 9th, its on my left arm and I'm right handed..
I have to see the Cardio, my PCP and have some blood work..
Its still cool here this week, for Easter we had nice weather...
take care
JB
I have to see the Cardio, my PCP and have some blood work..
Its still cool here this week, for Easter we had nice weather...
take care
JB
Here in Dublin we're having a crazy cold-snap. Seriously, it's almost two in the afternoon and 2° outside! (35°F) Everyone's hunkered down waiting for spring.
It's a holiday here, so it's all about relaxing. Camp Nanowrimo starts today, so I'm taking some time to focus on writing every day this month.
Tomorrow is my visit for week 112 of the drug study I'm on. It's a longer, quarterly visit, so I get to do all the fun cognitive testing as well as meet with the principle investigator. All quiet on the disease front. I'm very pleased to be 'the boring patient' in these situations!
It's a holiday here, so it's all about relaxing. Camp Nanowrimo starts today, so I'm taking some time to focus on writing every day this month.
Tomorrow is my visit for week 112 of the drug study I'm on. It's a longer, quarterly visit, so I get to do all the fun cognitive testing as well as meet with the principle investigator. All quiet on the disease front. I'm very pleased to be 'the boring patient' in these situations!
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