Aa
Thankful for this Forum
I am so Thankful for this forum. I have found more information here than most of my doctor visits.
Today I had a follow-up with my NL and when we discussed my meds and it possibly causing me to cough, he pulled out his Iphone, umm nope, it doesn't show that as a side effect, but we will lower the dose. Wow. Then of course back to the, you know your injury really wasn't that bad so workman's comp is really going to want me to finish with you. Ok I think he forgot I have Chiari Malformation of course hitting my head on a steel beam is going to be different for me then some one who doesn't have Chiari.
I go for my annual check up on Monday. Are there any tests I should ask them to add to the bloodwork this year?
December 12th I have a follow-up with my NS, it definitely looks like surgery is the route that I am on, although I am trying to put the stall brakes on it. I worry about not knowing how long I will be out of work. Right now I am lucky to make it through a full work week. But if I am having a bad day and my husband is at work I have to rely on my kids to help me. I hate having them see me in pain and that I can't drive them anywhere. Usually this time of year I would be baking up a storm, now I have no energy, and I keep dropping stuff. I always have a headache, it just varies on bad it is. I wear sunglasses everywhere, can't even attend church the music is too loud. I use to be a multi-tasker, now it's hard to focus on one task, if someone distracts me I completely forget what I was doing and have to start over.
Dawn :)
Today I had a follow-up with my NL and when we discussed my meds and it possibly causing me to cough, he pulled out his Iphone, umm nope, it doesn't show that as a side effect, but we will lower the dose. Wow. Then of course back to the, you know your injury really wasn't that bad so workman's comp is really going to want me to finish with you. Ok I think he forgot I have Chiari Malformation of course hitting my head on a steel beam is going to be different for me then some one who doesn't have Chiari.
I go for my annual check up on Monday. Are there any tests I should ask them to add to the bloodwork this year?
December 12th I have a follow-up with my NS, it definitely looks like surgery is the route that I am on, although I am trying to put the stall brakes on it. I worry about not knowing how long I will be out of work. Right now I am lucky to make it through a full work week. But if I am having a bad day and my husband is at work I have to rely on my kids to help me. I hate having them see me in pain and that I can't drive them anywhere. Usually this time of year I would be baking up a storm, now I have no energy, and I keep dropping stuff. I always have a headache, it just varies on bad it is. I wear sunglasses everywhere, can't even attend church the music is too loud. I use to be a multi-tasker, now it's hard to focus on one task, if someone distracts me I completely forget what I was doing and have to start over.
Dawn :)
So I am having a super painful day and not in the highest spirits so I want to thank you for your story,i love it! We have to do what we have to do!
Yeah!! That only took 2 phone calls, but I should be able to get copies of my Brain MRI films on Saturday morning. At first they said they didn't do that anymore, that they have upgraded with the technology, but when I explained which doctor I was going to they came around. Just means I need to wake up earlier on Saturday so that I can get it done before work. But happy that it just seems like everything is falling right in place.
Dawn :)
Dawn :)
Ok my NS emailed me back, and wants me to see the suggested Neuro-Ophthalmologist. Called the NO office now need NS and Eye Doc to fax records to her before I can get an appointment can be scheduled. I'll also need to make a trip to the hospital records department to try to get a copy of my Brain MRI films, she doesn't do cds.
COMMUNITY LEADER
Hi.....may I ask, dose ur sister tan easily...would u consider her to have an olive skin tone?
The reason I ask, is those with the olive skin take longer to absorb the suns rays that make vit D....so, it is like wearing sunblock in a way....
This is good to know b4 a surgery as this could pose a problem, good thing to figure out now.
Our eyes get soooooooo messed up from chiari.....do let me know how the next visit goes.
"selma"
Not D3 just Vitamin D, and as dark of a tan as my sister has I highly doubt she wears sunblock. We both grew up here in Central FL, so not being able to go out an enjoy the sun with the family, I feel like such a homebody. My eldest daughter is very much an inside person, so she keeps me company.
Well I made it through an eye exam, an annual physical and a dental exam. The 1st 2 were Monday, dental was today, I got to educate my dentist on Chiari, he said he will be looking it up. I barely made it through the eye exam, everytime he did the did you see 2 or 1 are tell me when they are on top of each other. I had to close my eyes for a bit, it was making me dizzy.
Eye doctor wants me to see a Neuro-ophthalmologist, I am waiting to hear back from my NS on his thoughts. I have a follow-up with the NS on Dec 12th, so if he doesn't reply to my email I'll just ask him again then.
My PCP set me up for all the bloodwork, I'm also getting tested for Factor V Ledien, found out from a family member it runs in the family. Since it's a blood clot disorder she added some other types also to make sure I don't just have a different one.
Dawn:)
Well I made it through an eye exam, an annual physical and a dental exam. The 1st 2 were Monday, dental was today, I got to educate my dentist on Chiari, he said he will be looking it up. I barely made it through the eye exam, everytime he did the did you see 2 or 1 are tell me when they are on top of each other. I had to close my eyes for a bit, it was making me dizzy.
Eye doctor wants me to see a Neuro-ophthalmologist, I am waiting to hear back from my NS on his thoughts. I have a follow-up with the NS on Dec 12th, so if he doesn't reply to my email I'll just ask him again then.
My PCP set me up for all the bloodwork, I'm also getting tested for Factor V Ledien, found out from a family member it runs in the family. Since it's a blood clot disorder she added some other types also to make sure I don't just have a different one.
Dawn:)
COMMUNITY LEADER
U can trim them down and wear a stretchy head band.....lol....
U got to do what u got to do.....
Just inmagine someone in the audience with cig. butt's sticking out of their ear's. I have short hair at the time. So wearing a pair of sun glasses and ear plug's doesn't sound so bad. Sit there in pride honey. At least your there. Thinking about it I think I'll let my hair grow. LOL!!!
COMMUNITY LEADER
Do u take a D3?...and does ur sister wear sunblock, if so that is the reason....it blocks the rays we do need...so 15 mins of sun with out burn is suggested for everyone...
Be sure to check ur calcium as well which is y D3 is important.....
@linnie, I went to a concert a few months back and I got myself some earplugs....too much noise is still a trigger..and it helps to filter some of it out, and regardless if some feel I am anti social I do tend to sit off in a corner instead of in the thick of things...it is easier on me, always has been...I say do what is best for u, and the heck with the others and what they think...lol...
"selma"
Thank you, for responding. Now I don't feel so bad for thinking about wearing earplugs if I go out to an event. I've realized it is the only way I can even try to go to anything on a good day and it still be a good day afterwards.
I had mentioned it to my family after the last time I tried going to church, that maybe I could try that and wear my hair down so no one would notice. My aunt was quick to point out, like they don't notice you are wearing sunglasses?
I had mentioned it to my family after the last time I tried going to church, that maybe I could try that and wear my hair down so no one would notice. My aunt was quick to point out, like they don't notice you are wearing sunglasses?
Selma, I am taking extra Vit D, yes I was deficient. I don't know if it was because of the sun as my sister and I got tested by our Endo doc about the same time she is always out in the sun and I completely avoid it for obvious reasons and we were both deficient.
But I will be talking to my PCP about getting testing for the magnesium.
But I will be talking to my PCP about getting testing for the magnesium.
I can totally relate. I used to not be able to sit down for a sec and now I am blessed if I make it to do a load of laudry. :) it's not funny. It's very flustrating and having chairi just makes life a little more challenging than other's. I also had a lot of quilt at first with my kid's and now I have grand kid's that I would love to do thing's with, but can't due to the noise and such. We just need to find different way's of doing thing's. I know about the noise and I suggest which has helped me so much is ear plug's. I couldn't go watch my grand kid's program's without them. Having chairi is life changing it's just finding the different way's of going about it. I have to share this story I thought was pretty funny. My grandaughter had a play we went to and when I got there My duaghter's friend asked me right away if I had my ear plug's. Shoot!!! I forgot and was dissappointed because I knew I wouldn't be able to get through it. She take's out her cig pack and rip's off the butt's of them. Boom ear plug's LOL. What ever work's. She said military style. It worked. If there is will there is a way. Just needed to share. I thought it was pretty cool. I got through the program just fine.
COMMUNITY LEADER
What about Vit D?....we all need that as well, and it seems with the use of sun screens too many of us are deficient.
Do have ur PCP check these levels to be sure u r getting the right dosage and the ones u need.
Check with ur State of FL WC laws, cuz I know in PA we have to see the WC dr the first 90 days then we can go to a dr of our choice.
"selma"
My accident was Feb 2010.
And the energy yes, I definitely could go right back to bed. I sometimes do just get up to take my medicine at the same time on my days off and go right back to sleep.
Magnesuim is probably the only supplement I'm not taking. On top of a One A Day Women's multi-vitamin, I take a B12 Sublingual 2500mg, D 2000mg, and a Potassium can't remember right now what mg it is. I only take the potassium if I run out of bannanas between grocery shopping trips.
And the energy yes, I definitely could go right back to bed. I sometimes do just get up to take my medicine at the same time on my days off and go right back to sleep.
Magnesuim is probably the only supplement I'm not taking. On top of a One A Day Women's multi-vitamin, I take a B12 Sublingual 2500mg, D 2000mg, and a Potassium can't remember right now what mg it is. I only take the potassium if I run out of bannanas between grocery shopping trips.
COMMUNITY LEADER
Please refresh my chiari brain....how long since ur accident?...Is the NL a WC Dr?...if so, has enuff time elapsed that u can go to an independent NL and not the CW one?
Also may I ask, when u say u have no energy do u feel like u could go to bed when u r getting up in the AM? I started on a magnesium supplement and it is helping...talk to ur PCP about this.
"selma"
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