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Old 12-04-2013, 07:26 AM   #1981
pannm
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She is 9. Yes, she's been tested for Lyme disease...3 times in fact. Nothing ever showed up.

Went to the Dr. yesterday and she drew 10 tubes of blood and did scans. Scans showed inflammation, but nothing wrong with the organs in that area. She said that if vitamins and minerals are very low, sometimes people have inflammatory problems. It could be that.

She may (probably) have absorbtion issues. Even though she's consuming enough vitamins, it doesn't matter at all if they aren't absorbed.

This morning, we have water therapy. She's actually excited about that.
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Old 12-04-2013, 07:43 AM   #1982
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Quote:
Originally Posted by pannm
She is 9. Yes, she's been tested for Lyme disease...3 times in fact. Nothing ever showed up.

Went to the Dr. yesterday and she drew 10 tubes of blood and did scans. Scans showed inflammation, but nothing wrong with the organs in that area. She said that if vitamins and minerals are very low, sometimes people have inflammatory problems. It could be that.

She may (probably) have absorbtion issues. Even though she's consuming enough vitamins, it doesn't matter at all if they aren't absorbed.

This morning, we have water therapy. She's actually excited about that.
Thinking of her today. Poor girl. Water therapy sounds fun
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Old 12-04-2013, 12:17 PM   #1983
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Quote:
Originally Posted by pannm
She is 9. Yes, she's been tested for Lyme disease...3 times in fact. Nothing ever showed up.

Went to the Dr. yesterday and she drew 10 tubes of blood and did scans. Scans showed inflammation, but nothing wrong with the organs in that area. She said that if vitamins and minerals are very low, sometimes people have inflammatory problems. It could be that.

She may (probably) have absorbtion issues. Even though she's consuming enough vitamins, it doesn't matter at all if they aren't absorbed.

This morning, we have water therapy. She's actually excited about that.
Sorry you still don't have answers. (((HUGS))) I imagine it must be terrifying to not have answers for your little girl. I think most of us here don't absorb things well. Glad her organs are not infected that is really important. Are they looking for any rare autoimmune diseases in all those viles of blood? Have you tried genetic testing? Maybe there is something odd there. I don't think any of us here have had that. She is so young maybe it would be worth a try.you both are in my thoughts every day.


Sending pain free vibes and pixie dust to all my fibro friends
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Old 12-05-2013, 12:14 AM   #1984
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Hi all!!

I had a FABULOUS Rheumy appointment today!! It may sound weird, but I think you all understand.. My Dr is amazing, listens, talks, listens.. The wait is min 2 hours, and he is ALL yours for as long as you need, so nobody complains..

Well, as we know my left rotator has two tears, and we believe my right is on it''s way, so more MRI's being ordered.. We went on to discuss EDS and hypermobility, and he was like " OMG, I can't believe I never tied this together".. So we do those tests, and he is not a geneticist, so can't confirm, but is going to send me to one (LONG WAIT), but my joints are all hypermobile, my measurements across measure for a person of 5"6 or so, and I am 5'1 on a GOOD hairday .. He had to do these 3x as he couldn't believe it.. He was the Dr who discovered my Chiari and Sjrogen's.. Always listening to me, never telling me I was crazy or a drug seeker..

All in all it just felt good to know why these crazy things keep happening.. A name to something you know? Sometimes with all these invisible illnesses, we (or I) sometimes question myself..


On another note, I had my CTSCAN with iodine yesterday for my Chiari returning , and the lump they see in my neck... Strange to me, as I have had MANY, the technician stopped the test, came out to say I see the lump let me mark it.. Then it was all done she asked me to stand up and is saying I just want to find the one in your upper shoulder .. This wasn't mentioned to me, and NEVER EVER has a technician ever say more than "the results will be forwarded to your DR". So I am a little nervous, and expect a callback.. Really hoping the lump is scar tissue, as I can not and will not undergo another brain surgery...


Thinking of everyone, I know winter isn't easy.. Tomorrow it is supposed to be very mild here.. Rain, I will take it as opposed to snow... My husband took tomorrow off to do some kitchen work before our cabinets come in, so that throws off my day...

Gentle hugs everyone
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Old 12-05-2013, 12:31 AM   #1985
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Originally Posted by mommasita View Post
Hi all!! I had a FABULOUS Rheumy appointment today!! It may sound weird, but I think you all understand.. My Dr is amazing, listens, talks, listens.. The wait is min 2 hours, and he is ALL yours for as long as you need, so nobody complains.. Well, as we know my left rotator has two tears, and we believe my right is on it''s way, so more MRI's being ordered.. We went on to discuss EDS and hypermobility, and he was like " OMG, I can't believe I never tied this together".. So we do those tests, and he is not a geneticist, so can't confirm, but is going to send me to one (LONG WAIT), but my joints are all hypermobile, my measurements across measure for a person of 5"6 or so, and I am 5'1 on a GOOD hairday .. He had to do these 3x as he couldn't believe it.. He was the Dr who discovered my Chiari and Sjrogen's.. Always listening to me, never telling me I was crazy or a drug seeker.. All in all it just felt good to know why these crazy things keep happening.. A name to something you know? Sometimes with all these invisible illnesses, we (or I) sometimes question myself.. On another note, I had my CTSCAN with iodine yesterday for my Chiari returning , and the lump they see in my neck... Strange to me, as I have had MANY, the technician stopped the test, came out to say I see the lump let me mark it.. Then it was all done she asked me to stand up and is saying I just want to find the one in your upper shoulder .. This wasn't mentioned to me, and NEVER EVER has a technician ever say more than "the results will be forwarded to your DR". So I am a little nervous, and expect a callback.. Really hoping the lump is scar tissue, as I can not and will not undergo another brain surgery... Thinking of everyone, I know winter isn't easy.. Tomorrow it is supposed to be very mild here.. Rain, I will take it as opposed to snow... My husband took tomorrow off to do some kitchen work before our cabinets come in, so that throws off my day... Gentle hugs everyone
Ok i may be a little daft but i missed what he thinks it is. Isnt it odd that I just mentioned genetic testing in my last post and now you might get it? I don't think any of us here ever has. It might be the start of some really interesting info for all of us I'm sooo Glad you finally had a good day. I've been waking with migraines taking DD to bus stop then sleeping from 830 til 2! Not super painful but not getting much done last 3 days. kind of sleep where I fall asleep sitting up cant even listen to tv...total coma. Tonight, as you can see, I have insomnia which is completely normal for someone who basically slept for 3 days. We will see what tomorrow brings. Did find out one thing. Chiro not helping migraines. I had the start of one on Monday went to Chiro early am and back home to conk out. No change in migraine or migraine pattern. Good to know limits of treatment. Chiro has been by far the most effective thing I have tried for crash involving pain. Too bad it isn't helping my day to day issues that cause me to be disabled. Kinda had it in the back of my mind with long term tx maybe I could go back to work. Its been nearly 20yrs. You think I would let that go. LOL

Pain free vibes and pixie dust to all!
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Old 12-05-2013, 02:15 AM   #1986
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Originally Posted by tiggspring View Post
Ok i may be a little daft but i missed what he thinks it is. Isnt it odd that I just mentioned genetic testing in my last post and now you might get it? I don't think any of us here ever has. It might be the start of some really interesting info for all of us I'm sooo Glad you finally had a good day. I've been waking with migraines taking DD to bus stop then sleeping from 830 til 2! Not super painful but not getting much done last 3 days. kind of sleep where I fall asleep sitting up cant even listen to tv...total coma. Tonight, as you can see, I have insomnia which is completely normal for someone who basically slept for 3 days. We will see what tomorrow brings. Did find out one thing. Chiro not helping migraines. I had the start of one on Monday went to Chiro early am and back home to conk out. No change in migraine or migraine pattern. Good to know limits of treatment. Chiro has been by far the most effective thing I have tried for crash involving pain. Too bad it isn't helping my day to day issues that cause me to be disabled. Kinda had it in the back of my mind with long term tx maybe I could go back to work. Its been nearly 20yrs. You think I would let that go. LOL

Pain free vibes and pixie dust to all!
Yes, I think it may be something indeed, the genetic testing, I was not certain in the past, as I have heard some horror stories, but with more symptoms creeping up, it is worth a try..

No worries it is EDS or a form of it: Ehlers–Danlos syndrome

I sleep almost daily like that, once my daughter has gone. It seems it is my best sleep, but I almost hate myself once I get up..

So sorry about the headaches.. I have been getting more than the normal as well.. Do you have a good neuro? Mine is kind, but seems to just shrug and try this pill or that pill. I am so weary of that because of my mother, but I have taken my fulls months prescription already this month .. I am going to call the drugstore and see how that works, it is the first time..

Hugs back.
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Old 12-05-2013, 10:42 PM   #1987
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Originally Posted by mommasita View Post

Seaspray: THAT IS GREAT FOR YOUR SON Our sons sound a lot a like..
Sounds like a nice meal!

Well, I had the MRI with Arthro today~! I have had so many MRI's and CT's I should lite up like a glow worm .. Thankfully they generally don't bother me, it is noted I can not maintain the position with Chiari, so we must take breaks..

HOWEVER, I was petrified of this after stupid me googled it.. I took my son as they said no driving for 12 hours.. I was still frozen after and thought pffft this is nothing. I drove home, because he is a NEW driver, and we have LOOOOTS of black ice on the roads.. Fast forward to now, and it feels like a million aliens are in my shoulder trying to break through.. The needle to freeze was ok, until the Dr apologized and said now I have to go to the bone. It did freeze quickly, and I am supposed to be 1-3 days of taking it easy...

I hope you are all doing as well as we can.. Lots of love
Thanks! I think he is quite fortunate to have found such a great job so quickly after graduation. He agrees; poor kid we had been telling him for years that it could take a very long time before he might even just find an internship in his field. I'm glad we were wrong. lol

Your MRI sounds very painful. With the pain we all already have, just imaging anything invasive like that, even though it's necessary, makes me cringe.

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Seaspray so glad to see you! Congrats to your son! Boston is a tough town to get a job. Lots of demands on workers and lots of competition. I think your wish may already be coming true. For your DS to get the job from an internship means they know him quite well and fully accept his challengers or they wouldn't hire him. I am sure he feels pressure and inadequate at times but I would argue that anyone his age in the intense environment up there would feel that way. How wonderful for your son. I love Boston. I just never could afford to live there and once we decided to have a family we felt the stress and cost of living was not conducive to us having a good family life. It is fantastic for a young man making his way in this world!
Thanks, tigg! I think you might have my 2 sons mixed up. LOL My older son is the one who has a lot of problems and mental health issues right now. Well, they've been pretty bad for the last 5 years. He doesn't work right now, he's on disability, and he fights depression and severe anxiety. I just want to see that he can one day be self-sufficient. I hate the idea of what would happen to him if myself or his dad (my ex) or my DH aren't around to look after him. Oh well, I have to think positive... otherwise it makes ME depressed and feel anxious. Older DS did not have any obvious issues at all until middle school and high school. He was always a happy kid, carefree, did great in school, etc. Then we moved here to MA from NJ and he was teased and bullied and made fun of continuously, all through his school years here (4th - 12th). This changed him; he obviously had to have a predisposition to depression and anxiety, but what happened to him all those years brought them front and center and he still fights them every day. And I DID step in while he was in school and advocate for him when he couldn't. We had no idea about the depth of his depression until his suicide attempt in 2008. And then again in 2009. Somewhere here on the DIS I think I may have written a thread all about it, over on the COPING AND COMPASSION Board.


It's my younger son who graduated college this past spring and got the internship and then the job. He has mild Asperger's so he has had to push himself out of his comfort zone his entire life, but in the workplace he is very confident and makes an excellent impression.

When we moved here to MA, he was just starting 1st grade, and fortunately for him he fell in with a great group of friends that he was with all through his school years. And the town we live in is very small, so he was in a close-knit group of classmates. He quickly earned recognition as being one of the smartest kids in his grade, and he was friends with kids who were also smart, and/or into sports and/or into music. From 4th grade on he was in the school band, and in high school he was in concert band, the jazz band, played on the tennis team, the debate team, and cross country.

He got his first job making toast in a small breakfast place that one his aunts on his dad's side owned at the Jersey shore. Then when he was 16 he got a job in the local supermarket, then he was a dishwasher at his girlfriend's parents restaurant, then he got a job as a dishwasher at a BBQ place here in town and the owner loved him and when he left that job for his internship in Boston he was cooking and managing the kitchen staff of the restaurant.

All of that experience, along with his college degree, and his great work ethic, and his intelligence, and all of the confidence that he had garnered all of his life, left him in a good position to feel comfortable working for a big company in Boston. And because of all of the success he's had so far in life, he rarely feel inadequate, while my older son seems to always feel inadequate.

While my older DS was never made to fit in or feel accepted, my younger DS was readily accepted and even looked up to by his peers.

What a difference. How horrible for my older son, and how awesome for my younger son. I often wonder how my older son must feel when his younger brother comes home with such good news. I know it must bother him. He did try to go to college but that was during when his depression was the worst, and before we knew the extent of it.


*whew* Sorry this is so long... and thanks, if anyone is still reading.

Quote:
Originally Posted by pitterpint23 View Post
I've got news..

I'm being tested for invasive chiari malformation. Surgery is a must.

Hoping to be able to get around for my sons second birthday
Quote:
Originally Posted by pitterpint23 View Post
No worries. Its a brain disease which causes the cerebellum to be pushed on and causes fine motor function and other limb use loss. Headaches. And I have vision loss.
I didn't know what Chiari was either, so thank you for explaining that. I'm sorry you have it though.

Quote:
Originally Posted by pannm View Post
Had a bit of an issue over the last few days with our daughter. I'm wondering if anyone has/has known someone with fribro. who has had rib cage problems. My Daughter has a left rib cage pain that is really horrible. Her rib cage is occasionally 'misplaced/floating/elevated' to the point that the difference is quite visible. The bottom of her left rib looks like it's bending outwards at times.

We've spoken to two different Dr.s about it. We were told that it's 'something we need to keep an eye on.' but never given any sort of idea of what it could be.

Last night, we were up for about 4 hours straight. She was in tears and in pain- all over, but MOSTLY in her left rib cage area. Went into pain management DR. today and he examined her and found that there is 'significant amounts of inflammation' in her diaphragm area- which could mean a huge list of different things. It could be anything from a severe problem to a 'minor thing that can be fixed with medication.'

We are worried about inflammation in her organs, or blockages causing problems or who knows what. All the other pains are still there, but this one is 'not typical for Fibro.' as we were told by the peds. fibro. pain management department.

So tomorrow, she is set up for testing...blood work, scans and who knows what else. I am a nervous wreck, because the Dr. was really concerned. Plus this has been an on-going issue for a few weeks now, but getting worse.
I do have many things that seem to be related to each other, even though the doctors don't know the exact reason why the same people seem to get them; I have fibromyalgia, I have IBS (irritable bowel syndrome), I have RA (rheumatoid arthritis), and also constochondritis, which is inflammation in the ligaments that hold the breastbone together. What your DD is going through sounds worse than that, but I wonder if there is a connection there. I've also had pleurisy a few times nflammation of the diaphragm) and THAT was very painful and often I had a costochonditis flair at the same time.


Quote:
Originally Posted by mommasita View Post
I can't imagine the worry for you... I wish I had something magical.. I will keep thinking and praying for you both>>XO

I have a lot of inflammation, but I have Sjrogen's Syndrome as well.. Very hard to diagnose from what I have learned over the years. I was one of the lucky ones, but sadly there is zippo to do for it attacking my organs..
My sister has Sjrogen's and fibromyalgia (as well as many, many major health problems her entire life). There has got to a common bond with all of these diseases.

Quote:
Originally Posted by pannm View Post
She is 9. Yes, she's been tested for Lyme disease...3 times in fact. Nothing ever showed up.

Went to the Dr. yesterday and she drew 10 tubes of blood and did scans. Scans showed inflammation, but nothing wrong with the organs in that area. She said that if vitamins and minerals are very low, sometimes people have inflammatory problems. It could be that.

She may (probably) have absorbtion issues. Even though she's consuming enough vitamins, it doesn't matter at all if they aren't absorbed.

This morning, we have water therapy. She's actually excited about that.
Does your DD have IBS by any chance? I know that when mine flares up, I get the runs really bad, and then my body doesn't have the chance to absorb vitamins and minerals properly.

I hope she has a good time at water therapy

Quote:
Originally Posted by mommasita View Post
Hi all!!

I had a FABULOUS Rheumy appointment today!! It may sound weird, but I think you all understand.. My Dr is amazing, listens, talks, listens.. The wait is min 2 hours, and he is ALL yours for as long as you need, so nobody complains..

Well, as we know my left rotator has two tears, and we believe my right is on it''s way, so more MRI's being ordered.. We went on to discuss EDS and hypermobility, and he was like " OMG, I can't believe I never tied this together".. So we do those tests, and he is not a geneticist, so can't confirm, but is going to send me to one (LONG WAIT), but my joints are all hypermobile, my measurements across measure for a person of 5"6 or so, and I am 5'1 on a GOOD hairday .. He had to do these 3x as he couldn't believe it.. He was the Dr who discovered my Chiari and Sjrogen's.. Always listening to me, never telling me I was crazy or a drug seeker..

All in all it just felt good to know why these crazy things keep happening.. A name to something you know? Sometimes with all these invisible illnesses, we (or I) sometimes question myself..


On another note, I had my CTSCAN with iodine yesterday for my Chiari returning , and the lump they see in my neck... Strange to me, as I have had MANY, the technician stopped the test, came out to say I see the lump let me mark it.. Then it was all done she asked me to stand up and is saying I just want to find the one in your upper shoulder .. This wasn't mentioned to me, and NEVER EVER has a technician ever say more than "the results will be forwarded to your DR". So I am a little nervous, and expect a callback.. Really hoping the lump is scar tissue, as I can not and will not undergo another brain surgery...


Thinking of everyone, I know winter isn't easy.. Tomorrow it is supposed to be very mild here.. Rain, I will take it as opposed to snow... My husband took tomorrow off to do some kitchen work before our cabinets come in, so that throws off my day...

Gentle hugs everyone
Quote:
Originally Posted by tiggspring View Post
Ok i may be a little daft but i missed what he thinks it is. Isnt it odd that I just mentioned genetic testing in my last post and now you might get it? I don't think any of us here ever has. It might be the start of some really interesting info for all of us I'm sooo Glad you finally had a good day. I've been waking with migraines taking DD to bus stop then sleeping from 830 til 2! Not super painful but not getting much done last 3 days. kind of sleep where I fall asleep sitting up cant even listen to tv...total coma. Tonight, as you can see, I have insomnia which is completely normal for someone who basically slept for 3 days. We will see what tomorrow brings. Did find out one thing. Chiro not helping migraines. I had the start of one on Monday went to Chiro early am and back home to conk out. No change in migraine or migraine pattern. Good to know limits of treatment. Chiro has been by far the most effective thing I have tried for crash involving pain. Too bad it isn't helping my day to day issues that cause me to be disabled. Kinda had it in the back of my mind with long term tx maybe I could go back to work. Its been nearly 20yrs. You think I would let that go. LOL

Pain free vibes and pixie dust to all!
I'm sorry that the chiropractor wasn't able to give you any relief for your migraine.

Quote:
Originally Posted by mommasita View Post
Yes, I think it may be something indeed, the genetic testing, I was not certain in the past, as I have heard some horror stories, but with more symptoms creeping up, it is worth a try..

No worries it is EDS or a form of it: Ehlers–Danlos syndrome

I sleep almost daily like that, once my daughter has gone. It seems it is my best sleep, but I almost hate myself once I get up..

So sorry about the headaches.. I have been getting more than the normal as well.. Do you have a good neuro? Mine is kind, but seems to just shrug and try this pill or that pill. I am so weary of that because of my mother, but I have taken my fulls months prescription already this month .. I am going to call the drugstore and see how that works, it is the first time..

Hugs back.
I didn't know what EDS was either, so thank for saying.

All of us sound exactly the same with the overwhelming fatigue and having to sleep so much and falling into a "coma" in the middle of the day. The only thing that has helped me with that is the Adderall EX. My doctor prescribed that to me a few months ago because in addition to being prescribed for ADD/ADHD, it's also the medication to treat narcolepsy and daytime sleep disorder.

My latest and newest problem is my thumbs! I get bad pain at the base of each thumb, the joint at the base of the thumb. I'm losing the little bit of strength in my hands that I had. I have to make an appt to go back to the rheumatologist to see what I can do to help this. I already sleep in wrist splints at night, I want to make sure that they aren't contributing to this new-ish thumb pain.

Anyway, that's it for me. I'm back on MANDATORY extra hours at work again. I worked a couple of hours this morning, which is my day off. And next week I have to work on both of my days off, at least for a few hours each of those days. And the bad part is, I don't make much per hour, so it's not even like I have a big paycheck to look forward to at the end.

Goodnight everyone. Hugs and pixie dust.
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Old 12-06-2013, 01:19 AM   #1988
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SeaSpray, wow so interesting, and sorry at the same time about your sister .. It isn't often I run into someone that even knows what it is.......
SS that is

Chiari (Like pitterpint) was what my brain surgery was for... That seems to be more common than SS.. I am in a marvelous group on FB, and everyone is overwhelming kind and helpful..

I hope you can rest inbetween those shifts.. That sounds like quite a rough time coming up! So you have NO days off?

I think I have hit this wall, and am now going to agree with my Dr's about seeing about permanent disability.. It will be 4 years this month I am on LTD, and with the latest events, I just cry thinking about it.. I will see how this goes, but I have every Dr on my side. It just took me longer to agree!!

Hugs to everyone
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Old 12-06-2013, 12:43 PM   #1989
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Hello everyone!

Been checking in to see how everyone is doing but today I FINALLY have the ability to respond. Lol.

I've been home sick the last 3 days. Just a cold but it still hits me like a ton of bricks.

Last week I had the whole week off for Thanksgiving and had really bad fog on Tuesday. I has two assignments due for a class. I turned them in but I have no recollection of actually doing them Oops. Got full credit though. Lol.

The biggest thing for me this past week was my first trip to Club 33! It was amazing and we had a great time. I got a little teary eyed taking it all in. Yup... I'm a dis nerd! Will hopefully be posting some pics soon!

When I have a migraine I find that acupuncture has done WONDERS! I really need to start going back. I definitely realize that I have multiple types of headaches going on simultaneios. Isn't it great The one at the back of my head that is caused by my inverted cervical spine is actually somewhat relieved by the chiropractor. But my halo one (it just kind of radiates around my head. Lol) is not affected at all. I seem to also have a sinus headache that is relieved with decongestants So yeah. I have a lot of fun stuff going on all the time.

Hope to have more thorough responses to come! I just need to make my brain work again

Much love and many pain free hugs to all!
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Old 12-06-2013, 05:31 PM   #1990
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Hello everyone!

Been checking in to see how everyone is doing but today I FINALLY have the ability to respond. Lol.

I've been home sick the last 3 days. Just a cold but it still hits me like a ton of bricks.

Last week I had the whole week off for Thanksgiving and had really bad fog on Tuesday. I has two assignments due for a class. I turned them in but I have no recollection of actually doing them Oops. Got full credit though. Lol.

The biggest thing for me this past week was my first trip to Club 33! It was amazing and we had a great time. I got a little teary eyed taking it all in. Yup... I'm a dis nerd! Will hopefully be posting some pics soon!

When I have a migraine I find that acupuncture has done WONDERS! I really need to start going back. I definitely realize that I have multiple types of headaches going on simultaneios. Isn't it great The one at the back of my head that is caused by my inverted cervical spine is actually somewhat relieved by the chiropractor. But my halo one (it just kind of radiates around my head. Lol) is not affected at all. I seem to also have a sinus headache that is relieved with decongestants So yeah. I have a lot of fun stuff going on all the time.

Hope to have more thorough responses to come! I just need to make my brain work again

Much love and many pain free hugs to all!
OH poor u... I had it, and am just feeling better.. Glad you are too! I often lurk, and have nothing in me to write.. That is what is great about us! We get it

I WAS WONDERINg about that adventure.. I will have to google it, as I don't know anything..

So, it was everything you had hoped and more?
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Old 12-09-2013, 05:55 PM   #1991
tiggspring
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How is everyone doing in this crazy weather?


I feel like I've been hit by a bus...so tired, vision all gray, sometimes blurry. Maybe migraines w/o pain I sometimes get.


The Good.. We got to see frozen 3d YEA! it was wonderful. I mean really wonderful in 3d

The Bad ...I found a thread here where people were less than kind. You know the kind where you read a post and feel insulted but then wonder if its just you misreading things...until you do some digging and find out no ..just subtle mean girls . I will never understand why people cant give others the benefit of the doubt and be kind or at least stay off threads that have nothing to do with their lives if they are only going to be critical of others and unhelpful. So I unsubbed the thread, joined the smilie club thread and came back here. Now I will get a random smilie and great support here. (((HUGS))) Maybe if you need a random smile you can join them too


Sending pain free vibes and pixie dust to all my fibro friends.
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Old 12-09-2013, 06:54 PM   #1992
1girln3boys
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I really don't think people can even begin to know the pain we live everyday. I hate the response "get a wheelchair". Also the fatigue is unbearable at times . Yes this weather can make it all worse.
I've had pain most of my life just didn't know why. I've learned to just live with it but know that I know why and can control it to a degree it's nice.
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Old 12-09-2013, 08:19 PM   #1993
tiggspring
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Quote:
Originally Posted by 1girln3boys View Post
I really don't think people can even begin to know the pain we live everyday. I hate the response "get a wheelchair". Also the fatigue is unbearable at times . Yes this weather can make it all worse.
I've had pain most of my life just didn't know why. I've learned to just live with it but know that I know why and can control it to a degree it's nice.
This was totally it! A member was pushing a wheel chair upon someone who it would be no use to. They actually told them to buy one not just rent one! Of course it never occured to them that a mother with small children has no one to push the chair . I jumped in explaining how small day to day things impact me and why the wheel chair wouldn't help me either. They then say they didn't get it . So I explained a bit more then suggested they lurk around here or ask someone with MS, Parkinson's and they may have a better idea since the discussion was a bit off topic . I got accused of being presumptuous that she didn't have knowledge of these diseases. Well she did just say she didn't get it and her suggestions were totally off the mark. Couple peeps there also drank the "WDW" is perfect coolaid so it was no use discusing how hard it was for people like us there. I love WDW but it is a challenge. Thats not negative, thats reality..GRRR Vent over

here is the Smile I found today


Thanks for letting me vent and being so perceptive. It is so great to have people that instantly get it so I can get it off my chest and let it go
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Old 12-09-2013, 11:47 PM   #1994
SeaSpray


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Loud people give me Skull Pain!
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Quote:
Originally Posted by mommasita View Post
SeaSpray, wow so interesting, and sorry at the same time about your sister .. It isn't often I run into someone that even knows what it is.......
SS that is

Chiari (Like pitterpint) was what my brain surgery was for... That seems to be more common than SS.. I am in a marvelous group on FB, and everyone is overwhelming kind and helpful..

I hope you can rest inbetween those shifts.. That sounds like quite a rough time coming up! So you have NO days off?

I think I have hit this wall, and am now going to agree with my Dr's about seeing about permanent disability.. It will be 4 years this month I am on LTD, and with the latest events, I just cry thinking about it.. I will see how this goes, but I have every Dr on my side. It just took me longer to agree!!

Hugs to everyone
Hugs to you, mommasita, I think I may be getting closer to giving up the idea of working too. The stress that I feel when I'm too sick to go to work is pretty bad. I think I should look into FMLA or something like that, I think it covers time off due to chronic illness. Does anyone know about this?

Well I stayed home from work yesterday and today, mainly due to extreme fatigue, migraine headaches, blurry vision, dizzyness, etc. I'll go in to work tomorrow and hopefully not get fired.

I have to work on Thursday and also on Saturday which are my regular days off. Only a few hours on those days though.

Quote:
Originally Posted by rosanab1031 View Post
Hello everyone!

Been checking in to see how everyone is doing but today I FINALLY have the ability to respond. Lol.

I've been home sick the last 3 days. Just a cold but it still hits me like a ton of bricks.

Last week I had the whole week off for Thanksgiving and had really bad fog on Tuesday. I has two assignments due for a class. I turned them in but I have no recollection of actually doing them Oops. Got full credit though. Lol.

The biggest thing for me this past week was my first trip to Club 33! It was amazing and we had a great time. I got a little teary eyed taking it all in. Yup... I'm a dis nerd! Will hopefully be posting some pics soon!

When I have a migraine I find that acupuncture has done WONDERS! I really need to start going back. I definitely realize that I have multiple types of headaches going on simultaneios. Isn't it great The one at the back of my head that is caused by my inverted cervical spine is actually somewhat relieved by the chiropractor. But my halo one (it just kind of radiates around my head. Lol) is not affected at all. I seem to also have a sinus headache that is relieved with decongestants So yeah. I have a lot of fun stuff going on all the time.

Hope to have more thorough responses to come! I just need to make my brain work again

Much love and many pain free hugs to all!

I'm glad you had a great time at Club 33. I'd love to see some pics if you felt like sharing.

Quote:
Originally Posted by tiggspring View Post
How is everyone doing in this crazy weather?


I feel like I've been hit by a bus...so tired, vision all gray, sometimes blurry. Maybe migraines w/o pain I sometimes get.


The Good.. We got to see frozen 3d YEA! it was wonderful. I mean really wonderful in 3d

The Bad ...I found a thread here where people were less than kind. You know the kind where you read a post and feel insulted but then wonder if its just you misreading things...until you do some digging and find out no ..just subtle mean girls . I will never understand why people cant give others the benefit of the doubt and be kind or at least stay off threads that have nothing to do with their lives if they are only going to be critical of others and unhelpful. So I unsubbed the thread, joined the smilie club thread and came back here. Now I will get a random smilie and great support here. (((HUGS))) Maybe if you need a random smile you can join them too


Sending pain free vibes and pixie dust to all my fibro friends.
Haters seem to be out in full force these days, spreading their unhappiness and meanness all over the internet.

Quote:
Originally Posted by 1girln3boys View Post
I really don't think people can even begin to know the pain we live everyday. I hate the response "get a wheelchair". Also the fatigue is unbearable at times . Yes this weather can make it all worse.
I've had pain most of my life just didn't know why. I've learned to just live with it but know that I know why and can control it to a degree it's nice.
You're right, no one can understand how this all feels unless they feel it too. People who mean well can sometimes say things that make me feel bad, nevermind people who really don't mean well.

Quote:
Originally Posted by tiggspring View Post
This was totally it! A member was pushing a wheel chair upon someone who it would be no use to. They actually told them to buy one not just rent one! Of course it never occured to them that a mother with small children has no one to push the chair . I jumped in explaining how small day to day things impact me and why the wheel chair wouldn't help me either. They then say they didn't get it . So I explained a bit more then suggested they lurk around here or ask someone with MS, Parkinson's and they may have a better idea since the discussion was a bit off topic . I got accused of being presumptuous that she didn't have knowledge of these diseases. Well she did just say she didn't get it and her suggestions were totally off the mark. Couple peeps there also drank the "WDW" is perfect coolaid so it was no use discusing how hard it was for people like us there. I love WDW but it is a challenge. Thats not negative, thats reality..GRRR Vent over

here is the Smile I found today


Thanks for letting me vent and being so perceptive. It is so great to have people that instantly get it so I can get it off my chest and let it go
:e arsgirl:princ ess:
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Old 12-10-2013, 12:46 AM   #1995
mommasita
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Hi everyone!!

I can't and will never understand mean girls, or mean threads... I always "try" and go with , if you have nothing nice to say, say nothing.. And feeding these people seems to give them pleasure.. They need more help than we ever will.

Sorry to hear Tigg.. We have gotten off pretty easy, for us that is... Had snow today, but less than predicted.. We are hitting a deep freeze, so that should be wonderful .. Hope your migraines ease up. Seapsray same to you as well, and everyone else

We are still in wonderful renovation land .. I have to laugh or I will .. I dust, and then there are 3 layers.. Trying to keep my eye on the prize..

The holidays are coming too quickly for my liking.. Always hard with split families, but alas it will be over..

Gentle hugs all around
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