it's confirmed
- Thread starter Jena
- Start date
graceupongrace
New Member
Glad you posted. I was thinking of you today and wondering how you were getting along. Your good attitude will go a long way toward easing your symptoms, I bet. Now if you can just keep everyone from driving you crazy.... Hugs.
Hound dog
Nana's are Beautiful
(((hugs)))
Rattling those beads and praying hon.
I found that focusing on the kids helped me stay both positive and keep the "falling apart" thing down to minimal. And all these years later, it still works.
I was also open and honest with my kids over my kidney disease. I did a lot of surgeries, hospitalizations ect and to me it's scarier as a kid to NOT know what's going on (you know the Big Bad Secret thing), than to have it explained in terms they can understand. They don't have to know all the gory details, but yeah. I think that is how I acquired my award winning acting skills. lol Hospital staff would be amazed that I could have "ice cream parties" on my bed with my kids after major surgery, tubes hanging out of me everywhere, kids not phased a bit. (nurses used to spoil them with chocolate ice cream when they'd visit me, we called them ice cream parties lol)
I'm glad you have a doctor that is On It and not making you wait to get started on medications. Sounds like a great doctor.
Hang in there.
Rattling those beads and praying hon.
I found that focusing on the kids helped me stay both positive and keep the "falling apart" thing down to minimal. And all these years later, it still works.
I was also open and honest with my kids over my kidney disease. I did a lot of surgeries, hospitalizations ect and to me it's scarier as a kid to NOT know what's going on (you know the Big Bad Secret thing), than to have it explained in terms they can understand. They don't have to know all the gory details, but yeah. I think that is how I acquired my award winning acting skills. lol Hospital staff would be amazed that I could have "ice cream parties" on my bed with my kids after major surgery, tubes hanging out of me everywhere, kids not phased a bit. (nurses used to spoil them with chocolate ice cream when they'd visit me, we called them ice cream parties lol)
I'm glad you have a doctor that is On It and not making you wait to get started on medications. Sounds like a great doctor.
Hang in there.
M
ML
Guest
I'm sorry to hear this Jena. I'm praying for the non progressive one.
Marcie Mac
Just Plain Ole Tired
Positive thoughts being sent your way.
Marcie
Marcie
everywoman
Well-Known Member
I'm so sorry you are facing this. Take care of yourself.
good atttitude?? LOL it's good you guys don't live with me...... poor husband got the unload last night. i keep the "game" face on for difficult child. i told her yesterday. made it very light and handled it like listen kiddo i'm going nowhere anytime soon i will be here to keep on you 
she laughed and said i'm scared. i said of what maybe doing more chores??
husband talked to her last night fora few minutes she was up till 2. kids been thru alot lost her sister here now me. sheesh...... he said i love you (and by the way the guy's not normally verbal), and mom will be ok she's tough and i'll always be here for you and together we'll get through it. she's still mom she just might need to take her breaks along teh way that's all.
tha'Tourette's Syndrome just it i'm the same jen i was before i got all this lovely info......... i gotta keep that in mind. deep down i always knew also. i'm a pretty good researcher lol. i nailed this mos. ago before the doctor's even did!
my attitude isn't great. i'm feeling it. yet i know someone who has it and well that's really helping me. we talk via email and her attitude is waht's keeping me in check. and yea i found an online support group to help me out with picking medications, learning the new lingo i have to learn.
thanks for the support. hey even my mom said i'll take you to lunch....... funny how ppl act when you get sick or something right ?? LOL
she laughed and said i'm scared. i said of what maybe doing more chores??husband talked to her last night fora few minutes she was up till 2. kids been thru alot lost her sister here now me. sheesh...... he said i love you (and by the way the guy's not normally verbal), and mom will be ok she's tough and i'll always be here for you and together we'll get through it. she's still mom she just might need to take her breaks along teh way that's all.
tha'Tourette's Syndrome just it i'm the same jen i was before i got all this lovely info......... i gotta keep that in mind. deep down i always knew also. i'm a pretty good researcher lol. i nailed this mos. ago before the doctor's even did!
my attitude isn't great. i'm feeling it. yet i know someone who has it and well that's really helping me. we talk via email and her attitude is waht's keeping me in check. and yea i found an online support group to help me out with picking medications, learning the new lingo i have to learn.
thanks for the support. hey even my mom said i'll take you to lunch....... funny how ppl act when you get sick or something right ?? LOL
DDD
Well-Known Member
There has to be a sense of relief in knowing what you are facing or may be facing. Like your other problems (and yes, you have had a heck of a time lately!) it will be a challenge to exclude your difficult child from your adult concerns. Since she accompanied you to the hospital and has overheard conversation about potential problems it's going to really hard to let her stay a kid and not have her try to absorb the adult problems you are facing.
Let your husband be your adult confidant. Let former easy child do her thing with-o your participation. Be difficult child's Mom helping her prepare for her return to school. THEN let every opportunity to relax come your way. I'm begging that your Dr., your husband and you can make this bad circumstance bearable. Hugs.
DDD
Let your husband be your adult confidant. Let former easy child do her thing with-o your participation. Be difficult child's Mom helping her prepare for her return to school. THEN let every opportunity to relax come your way. I'm begging that your Dr., your husband and you can make this bad circumstance bearable. Hugs.
DDD
DDD
Well-Known Member
Been thinking about you and had a "light bulb" moment. Decided to check for Forums that might allow you to share your feelings, get input and perhaps alleviate some fears. There appear to be a number of them that are legitimate. Perhaps you can find additional comfort and guidance via an MS board.
Maybe....just maybe....you will find supplemental friends who have been there done that and can ease your concerns.
Hugs. DDD
Maybe....just maybe....you will find supplemental friends who have been there done that and can ease your concerns.
Hugs. DDD
hi
i did that already lol....... great idea though......... thanks for thinking of me. had evp test today was hard on eyes. yet learning all the new medications and alot of them have such severe side effects. this one they spoke of today weakens the immune system and i'd have to go to the office 1 a mos to get it infused via i.v.
i want to learn them so that when we do have the conversation with him i'm knowledgable and won't have to do the difficult child game i play with her doctor whereas i run home and look them up.
alot to learn.... and my script for medication wasnt' ready today.their like drive back after 5? wt...... umm no thanks.
i did that already lol....... great idea though......... thanks for thinking of me. had evp test today was hard on eyes. yet learning all the new medications and alot of them have such severe side effects. this one they spoke of today weakens the immune system and i'd have to go to the office 1 a mos to get it infused via i.v.
i want to learn them so that when we do have the conversation with him i'm knowledgable and won't have to do the difficult child game i play with her doctor whereas i run home and look them up.
alot to learn.... and my script for medication wasnt' ready today.their like drive back after 5? wt...... umm no thanks.
Marguerite
Active Member
I always find that flashing checkerboard to be tiring.
About the legs - would valium work? I've had twitchy legs for years and when it really disturbs me, a small amount of valium seems to settle it to the point where I can cope.
As for the diagnosis and number of lesions - I had to chuckle. Of course the expert will find more! That's why we pay them! There is an old saying I have heard used on doctors who self-diagnose: "The doctor who treats himself has a fool for a patient."
My neuro keeps saying every so often, "I'm sure you have MS," but then the tests are done and they come back negative. it's been 27 years now and I still don't have a diagnosis that all doctors agree on. My eyes are fine, which makes MS less likely. But a lot of the other stuff - oh yes, I relate to it. The thing is, how you handle it emotionally plays a big part in how it affects the rest of your life. Some people I know will put their life on hold waiting for a period of remission, then they go for broke and really make a mess of themselves by overdoing things. Others simply sit and wait, and as a result years can go past and they are still waiting. Meanwhile life moves on.
Friends don't always hang around waiting for you to be well enough. They often don't want to hear. I lost friends, even though I said very little about my health. But I didn't have to say anything - friends would organise a picnic or a hike, for example, and I simply wouldn't be strong enough to go. So over time, they got into the habit of leaving me out of their plans. Or I would come along and they would see me wobble my away around, and it made them uncomfortable.
My friendship base changed. Now, most of my friends are people who never knew me in my healthy, active days. But they accept me as I am, which I like.
Family - your kids will resent it the most. It takes a lot longer, it scares them. I found it best to sit and talk with them, be frank. My kids were secretly afraid I was dying, but not telling them to save their feelings. It took a lot of reassurance, repeatedly, for them to understand. Then they began to take me for granted and assume I was fit and capable. It oscillated. And all the time this was happening, I had inside a quiet desperation to find out what the **&^ this disease of mine is called, so maybe they could make it stop. It took time for me to deal with my own grief for what I thought I should be. But I did find myself again. It's new, it's different, it's still a bit wobbly at times, but what is in my head is far more balanced than perhaps I ever was before.
It is normal to be angry at times, but stay in touch with your own mind so you always know where it's coming from. Learn to make your own space for yourself when you need it; it will be your saving grace.
As for whether this is relapsing/remitting or progressive - whichever it is, will be subject to change without notice. And tat is okay too, because you are a strong person and you WILL handle it.
Just don't let it consume you. Instead, live your life to the best of your ability.
Remember, I speak from personal experience.
And would you know? After more than 27 years, I'm actually doing better now than for a very, very long time. I just wish I knew what I had done right, so I can keep on doing it!
Marg
About the legs - would valium work? I've had twitchy legs for years and when it really disturbs me, a small amount of valium seems to settle it to the point where I can cope.
As for the diagnosis and number of lesions - I had to chuckle. Of course the expert will find more! That's why we pay them! There is an old saying I have heard used on doctors who self-diagnose: "The doctor who treats himself has a fool for a patient."
My neuro keeps saying every so often, "I'm sure you have MS," but then the tests are done and they come back negative. it's been 27 years now and I still don't have a diagnosis that all doctors agree on. My eyes are fine, which makes MS less likely. But a lot of the other stuff - oh yes, I relate to it. The thing is, how you handle it emotionally plays a big part in how it affects the rest of your life. Some people I know will put their life on hold waiting for a period of remission, then they go for broke and really make a mess of themselves by overdoing things. Others simply sit and wait, and as a result years can go past and they are still waiting. Meanwhile life moves on.
Friends don't always hang around waiting for you to be well enough. They often don't want to hear. I lost friends, even though I said very little about my health. But I didn't have to say anything - friends would organise a picnic or a hike, for example, and I simply wouldn't be strong enough to go. So over time, they got into the habit of leaving me out of their plans. Or I would come along and they would see me wobble my away around, and it made them uncomfortable.
My friendship base changed. Now, most of my friends are people who never knew me in my healthy, active days. But they accept me as I am, which I like.
Family - your kids will resent it the most. It takes a lot longer, it scares them. I found it best to sit and talk with them, be frank. My kids were secretly afraid I was dying, but not telling them to save their feelings. It took a lot of reassurance, repeatedly, for them to understand. Then they began to take me for granted and assume I was fit and capable. It oscillated. And all the time this was happening, I had inside a quiet desperation to find out what the **&^ this disease of mine is called, so maybe they could make it stop. It took time for me to deal with my own grief for what I thought I should be. But I did find myself again. It's new, it's different, it's still a bit wobbly at times, but what is in my head is far more balanced than perhaps I ever was before.
It is normal to be angry at times, but stay in touch with your own mind so you always know where it's coming from. Learn to make your own space for yourself when you need it; it will be your saving grace.
As for whether this is relapsing/remitting or progressive - whichever it is, will be subject to change without notice. And tat is okay too, because you are a strong person and you WILL handle it.
Just don't let it consume you. Instead, live your life to the best of your ability.
Remember, I speak from personal experience.
And would you know? After more than 27 years, I'm actually doing better now than for a very, very long time. I just wish I knew what I had done right, so I can keep on doing it!
Marg
marg
i wish you knew also what you did to feel better~!!!!!! lol that's funny.....
i'll be fine.... just going through the motions..... life is for living and this will teach me to appreciate each day to it's fullest more than i was already doing. yet once i start those yucky medications........ well my positive outlook may go a bit dreary for a few days lol.
if i keep my eyes that's my biggest concern i'll be thrilled and will happily cope through the rest of it. theyve been very challenged lately. as far as no lesions on you I don't know what to say. did they do a spinal mri and a cervical?? sometimes the lesions can be there and you do not get cognitively affected. mine is all that junk sensory, eyes, hearing, a bunch of other fun stuff.
its nice to have an answer and not think 'm nuts anymore. i found a great website that ijoined and im learning alot it's a support group.s o i'm spreading my joy there lately a bit. alot of sad ppl in there, alot of sad stories. today i told them about gratitude journalling lol their like oh no whose this chick?
thanks marg and hang in there too glad your feeling better
i wish you knew also what you did to feel better~!!!!!! lol that's funny.....
i'll be fine.... just going through the motions..... life is for living and this will teach me to appreciate each day to it's fullest more than i was already doing. yet once i start those yucky medications........ well my positive outlook may go a bit dreary for a few days lol.
if i keep my eyes that's my biggest concern i'll be thrilled and will happily cope through the rest of it. theyve been very challenged lately. as far as no lesions on you I don't know what to say. did they do a spinal mri and a cervical?? sometimes the lesions can be there and you do not get cognitively affected. mine is all that junk sensory, eyes, hearing, a bunch of other fun stuff.
its nice to have an answer and not think 'm nuts anymore. i found a great website that ijoined and im learning alot it's a support group.s o i'm spreading my joy there lately a bit. alot of sad ppl in there, alot of sad stories. today i told them about gratitude journalling lol their like oh no whose this chick?
thanks marg and hang in there too glad your feeling better
DDD
Well-Known Member
Great news that you found a comfortable web site. Obviously CD has been a life saver for me over the years. When easy child/difficult child had his brain surgery a CD RN suggested that I see out a support forum for Traumatic Brain Injury (TBI)'s. The people were welcoming, kind, and seemed to be available 24/7. I not only learned alot about medications, rehab etc. I also learned how lucky I was that progress was taking place quickly for him (although it didn't seem quick to us, lol) while other parents and spouses were caregiving for years in hopes of any sign of progress. Ten years ago I was guided to a site for Aspergers. That also taught me alot and widened my horizons for helping difficult child.
Doing the
(lol, suppose to be a Happy Dance but I can't find the Happy Dance!) for you! DDD
Doing the
(lol, suppose to be a Happy Dance but I can't find the Happy Dance!) for you! DDDddd thanks. yes i'm learning al the medications from them. it's sad though i'm not giong to lie. majority there do wind up crippled in wheelchairs, canes etc. bck to the motto live each day to it's fullest. i won't lie i'm scared. last night was very very bad. the spasms are now happening in teh day also. i don't know what i did different to set it off suddenly. yet my arm started to go today when we were in church for my nephew's communion. than last night i was up till 4 a.m. my body shaking with spasms.
so i had two bloody mary's and it stopped. thank goodness. yet tonight i have to go another round and tmrw til i get the medication on monday from the neuro's office.
and difficult child by the way is being really bad she;s pushing me at every turn. i get it's all hard on her yet zero understanding from her right now. we'll c.
so i had two bloody mary's and it stopped. thank goodness. yet tonight i have to go another round and tmrw til i get the medication on monday from the neuro's office.
and difficult child by the way is being really bad she;s pushing me at every turn. i get it's all hard on her yet zero understanding from her right now. we'll c.
