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Old 11-10-2013, 12:38 AM   #1951
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That sounds neat! RosanB!!

Good for you. Anxious to her all about it
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Old 11-13-2013, 09:11 PM   #1952
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That sounds neat! RosanB!! Good for you. Anxious to her all about it
Yeah. I'm super excited! Eeeeeeeep! :D
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Old 11-14-2013, 10:34 AM   #1953
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Lots of appointments this week! Our children's specialty hospital is set up by different specialty departments located on different floors. The floor with ped.s rheum. is a full floor of 4 Dr.s, 5-6 'fellows' and a bunch of support people (psych., physical therapy, pain management, chiro.). It's a great set up. I've really been happy with it. When you get an appointment to see the Dr- you don't know exactly which Dr. you'll see, but you always see the R.N. and a Fellow first. Then, the Dr. comes in. After that, it's various pain management activities (depending on your scheduled chiro. psych or whatever) It's a long appointment, they take their time and they really get involved in ALL areas (not just the actual Fibro. pain)...The last three times we've been there, I've really liked all of the staff, support team and Dr.s.

This time, we LOVED the R.N., pain management and fellow, but HATED the Dr. This Dr. came into the room, spoke in big words, talked AT US and not WITH us- we weren't even involved in the conversation at all. The only thing that my DD took away from it was that she hated this Dr.

We spoke to the fellow again after the Dr. who re-discussed EVERYTHING that the Dr. just said, but in a much more understandable way. Then, the fellow assured us that this Dr. was a temporary placement and that she would be going elsewhere next month- she was mostly an adult/elderly pain syndrome specialist- but I can't imagine how anyone of any age could understand her. If I couldn't understand her, I know MOST elderly people would be even more confused.

Her pain management part of the appt. went well. DD talked a lot about anger issues- being mad at her pain and feeling like her body doesn't work.

We also discussed doing some different types of natural/herbal things.

I spoke to a woman last night who said that a lot of people with Fibro. experiance more pain when their vitamin D levels are low. Have any of you had that issue. She has fibro and has delt with it for years. She said it's not just a regular blood test, it's an extended vitamin D test that needs to be done for it to show up. My daugter is low in vitamin d and calcium, and I know that she needs to have the right amounts of calcium in order to absorb vitamin D correctly (Dr. has told me that before)...

But this lady said that HER vitamin D is VERY VERY low, so much so that a regular vitamin D over the counter tablet isn't enough- she takes high doses of it and it needs to be perscribed...

Just wondering if others have had this issue as well? Or even with other vitamins?

I really would like to get that blood test done with my dd, certainly wouldn't hurt...

The tip about making her leave the house for a little while every 5-6 days a week has really been going well. We've been walking around the mall when it opens (people there, but not crazy busy! We're going slowly...right???) once or twice a week. That does double duty! Getting a little walk in AND being around people...Also going to the grocery store, out to eat, we even went to a movie! Thinking of joining a Yoga class- but we have to talk to her physical therapy people first.
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Old 11-17-2013, 11:06 AM   #1954
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Oh I don't think its prying at all! :D

I volunteer for Camp Ronald McDonald and one of the volunteers is a member or her family is a member... not sure which one! Lol. Anyway, she made the reservation and invited any of the volunteers to come There will be 33 of us going all together including myself and my little sister
Thats Fantastic! Looks really cool. The Mc Donald foundations are great. I stayed at the Ronald Mc Donald house when my DD1 was in ICU at the end of his life. They were kind enough to let me stay when I had no family wiling to hang around and help. I was lucky no families needed my small room. When my DD14 needed Kidney surgery we stayed there too in a different state. I can imagine the Camps are just as wonderful. A brief chance to be a bit norma

Thanks for Volunteering you have earned your Club 33 spot!



Quote:
Originally Posted by pannm View Post
Lots of appointments this week! Our children's specialty hospital is set up by different specialty departments located on different floors. The floor with ped.s rheum. is a full floor of 4 Dr.s, 5-6 'fellows' and a bunch of support people (psych., physical therapy, pain management, chiro.). It's a great set up. I've really been happy with it. When you get an appointment to see the Dr- you don't know exactly which Dr. you'll see, but you always see the R.N. and a Fellow first. Then, the Dr. comes in. After that, it's various pain management activities (depending on your scheduled chiro. psych or whatever) It's a long appointment, they take their time and they really get involved in ALL areas (not just the actual Fibro. pain)...The last three times we've been there, I've really liked all of the staff, support team and Dr.s.

This time, we LOVED the R.N., pain management and fellow, but HATED the Dr. This Dr. came into the room, spoke in big words, talked AT US and not WITH us- we weren't even involved in the conversation at all. The only thing that my DD took away from it was that she hated this Dr.

We spoke to the fellow again after the Dr. who re-discussed EVERYTHING that the Dr. just said, but in a much more understandable way. Then, the fellow assured us that this Dr. was a temporary placement and that she would be going elsewhere next month- she was mostly an adult/elderly pain syndrome specialist- but I can't imagine how anyone of any age could understand her. If I couldn't understand her, I know MOST elderly people would be even more confused.

Her pain management part of the appt. went well. DD talked a lot about anger issues- being mad at her pain and feeling like her body doesn't work.

We also discussed doing some different types of natural/herbal things.

I spoke to a woman last night who said that a lot of people with Fibro. experiance more pain when their vitamin D levels are low. Have any of you had that issue. She has fibro and has delt with it for years. She said it's not just a regular blood test, it's an extended vitamin D test that needs to be done for it to show up. My daugter is low in vitamin d and calcium, and I know that she needs to have the right amounts of calcium in order to absorb vitamin D correctly (Dr. has told me that before)...

But this lady said that HER vitamin D is VERY VERY low, so much so that a regular vitamin D over the counter tablet isn't enough- she takes high doses of it and it needs to be perscribed...

Just wondering if others have had this issue as well? Or even with other vitamins?

I really would like to get that blood test done with my dd, certainly wouldn't hurt...

The tip about making her leave the house for a little while every 5-6 days a week has really been going well. We've been walking around the mall when it opens (people there, but not crazy busy! We're going slowly...right???) once or twice a week. That does double duty! Getting a little walk in AND being around people...Also going to the grocery store, out to eat, we even went to a movie! Thinking of joining a Yoga class- but we have to talk to her physical therapy people first.
I'm glad things are improving! How great is it to see her out and about. I can imagine it make things feel more hopeful. Sorry about the Dr.. Unfortunately you cant teach empathy. Another thing you might want to try, I have found the xbox kinnect Disneyland game helped me with stamina. You do a lot of standing and leaning to complete most activities so its gentle movement with brief periods of more intense activities like throwing snowballs. Monkey ball was good to. I havent been able to do it in quite awhile but when I could it was quite helpful.

As far as vitamin D yes mine is extremely low so is my DH. Liquid vitamin d that you take sublingual (under tung) helps. Vitamin b12 taking same way can be helpful with fatigue. We can find both at pharmacy but generally buy through amazon.

Momma + Seaspray how you doing?

Someone posted about a surgery how are you doing?

Sening pain free vibes and Pixie dust to all
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Old 11-19-2013, 12:37 AM   #1955
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HI!

Pannm.. I do remember and often see that yes, there are a great many low on Vitamin D.. I have pernicious anemia, and my body rejects the pills. I self inject (dH reallY) every 2 weeks.. I went for a blood test today to check my levels.. B12 is miraculous as Tigg mentioned..


I am just ok.. Dealing with construction at home, basically a bloody nightmare, as DH is doing it in his spare time.. Which is basically non existent..

I have a busy appt week as well. Bloodwork today, Rheumy tomorrow, CT Wed for a lump in my neck, Thursday nothing , and Friday my MRI with contrast for my rotator, so the surgeon can see the damage more clearly..

Getting cold here, and this affects me so much..UGH.. Doubt we will travel anywhere warm, as these renos just add up and UP!

DS passed his license , started today at MCd's, and is taking his 2 night courses, and hoping he gets in full time for January..

hugs all around
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Old 11-19-2013, 08:21 AM   #1956
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Hello all. New here. I was dx was fibromyalgia just a few ago. I have lived in pain my whole life. In my legs, arms, and back.
Right now I take Lyrica and it really helps. Also yoga has been a huge help.
Looking forward to meeting others. I don't like most people get what we go through. I need to be in almost constant movement to keep from hurting. So when I was saying I would like to see if I can get a DAS I felt attacked. I can't just use a wheelchair bc sitting hurts my back. Standing still hurts my leg. So I'm hoping to get one so I can move about while waiting.
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Old 11-19-2013, 01:17 PM   #1957
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Originally Posted by mommasita View Post
HI!

Pannm.. I do remember and often see that yes, there are a great many low on Vitamin D.. I have pernicious anemia, and my body rejects the pills. I self inject (dH reallY) every 2 weeks.. I went for a blood test today to check my levels.. B12 is miraculous as Tigg mentioned..


I am just ok.. Dealing with construction at home, basically a bloody nightmare, as DH is doing it in his spare time.. Which is basically non existent..

I have a busy appt week as well. Bloodwork today, Rheumy tomorrow, CT Wed for a lump in my neck, Thursday nothing , and Friday my MRI with contrast for my rotator, so the surgeon can see the damage more clearly..

Getting cold here, and this affects me so much..UGH.. Doubt we will travel anywhere warm, as these renos just add up and UP!

DS passed his license , started today at MCd's, and is taking his 2 night courses, and hoping he gets in full time for January..

hugs all around
Good luck with all the tests! We have so many projects to do here that it feels like an episode of horders with a this old house crossover. Between my FMS and his schedule and Lyme disease NOTHING seems to get done.. Yard downright embarrasing!

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Hello all. New here. I was dx was fibromyalgia just a few ago. I have lived in pain my whole life. In my legs, arms, and back.
Right now I take Lyrica and it really helps. Also yoga has been a huge help.
Looking forward to meeting others. I don't like most people get what we go through. I need to be in almost constant movement to keep from hurting. So when I was saying I would like to see if I can get a DAS I felt attacked. I can't just use a wheelchair bc sitting hurts my back. Standing still hurts my leg. So I'm hoping to get one so I can move about while waiting.
1girl3boys



I think you will find the gang here very understanding. I have been here since 2009 and havent got flamed for typo, forgotten names or odd posts.We all seem to get that are brains have hiccups, there are days wee need to cheer, vent or ask advice. You wont find a better group on the DIS

I was just wondering what a DAS was? Did you mean a guest assistance pass or something else? I have gotten one for all my trips to WDW. Like you if I sit too long, stand too long and, in my case walk too long I'm in trouble. w ith ridemax I always managed to get a 5/5/5min ratio for most of my trip so those time I waited 20 min were not an issue. SInce real life doesnt work that way I tend to have more trouble at home where a wait at the Drs or a trip to the grocery store can send me reeling.

Sending pain free vibes and pixie dust to all!
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Old 11-19-2013, 01:28 PM   #1958
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Pannm

I noticed that you are from Ohio. Are you near a Giant eagle? Their gift cards go on sale for DBL fuel perks this Thursday. We have used the Disney cards to pay for all our trips. We even paid for our taxes and tips on our gift cards saved us 12%
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Old 11-19-2013, 04:11 PM   #1959
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Good luck with all the tests! We have so many projects to do here that it feels like an episode of horders with a this old house crossover. Between my FMS and his schedule and Lyme disease NOTHING seems to get done.. Yard downright embarrasing! 1girl3boys I think you will find the gang here very understanding. I have been here since 2009 and havent got flamed for typo, forgotten names or odd posts.We all seem to get that are brains have hiccups, there are days wee need to cheer, vent or ask advice. You wont find a better group on the DIS I was just wondering what a DAS was? Did you mean a guest assistance pass or something else? I have gotten one for all my trips to WDW. Like you if I sit too long, stand too long and, in my case walk too long I'm in trouble. w ith ridemax I always managed to get a 5/5/5min ratio for most of my trip so those time I waited 20 min were not an issue. SInce real life doesnt work that way I tend to have more trouble at home where a wait at the Drs or a trip to the grocery store can send me reeling. Sending pain free vibes and pixie dust to all!
The DAS is the new disabled assistant card. It helps you avoid having to stand in line and instead they give you a return time for you to come back. That way I can still stay moving and not be in pain.
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Old 11-19-2013, 07:14 PM   #1960
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The DAS is the new disabled assistant card. It helps you avoid having to stand in line and instead they give you a return time for you to come back. That way I can still stay moving and not be in pain.

I didn't realize they had changed the name but I did know they were making changes. Please let us know how it works for you. It sounded like it would be more work than standing in line since they said you would have to keep going back to a central location which would significantly increase walking. Please check out Ridemax. It kept me from needing a scooter for both our May trips. It really helped me to anticipate what changes would improve or make the day more difficult. We went last year week after Thanksgiving as my
DD was in the taping of the Christmas parade and crowds were a 2! Best of all everything was basically open and new rides on soft opening because they cant exactly get much repair work done in 3 weeks and everything has to be open for Christmas. If we go back it will most likely be the week after Thanksgiving as kids have 4 day week then and it was warm enough for us Northerners to swim and cool enough to wear a sweatshirt with your shorts (70 or so). At Disney studios we did star tours 4x in a row with less than a five minute wait and walked into fantasmic got perfect mid-row center seats and we showed up just minutes before show . We did feel a mixture of sympathy and amusement watching all the life guards in their heavy coats and lined pants sitting by the pool shivering in weather that we kill for up north.

thanks for the info
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Old 11-20-2013, 12:06 AM   #1961
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Originally Posted by 1girln3boys View Post
Hello all. New here. I was dx was fibromyalgia just a few ago. I have lived in pain my whole life. In my legs, arms, and back.
Right now I take Lyrica and it really helps. Also yoga has been a huge help.
Looking forward to meeting others. I don't like most people get what we go through. I need to be in almost constant movement to keep from hurting. So when I was saying I would like to see if I can get a DAS I felt attacked. I can't just use a wheelchair bc sitting hurts my back. Standing still hurts my leg. So I'm hoping to get one so I can move about while waiting.
Hi there!!

Glad Lyrica helps you.. One of my best friends also has bad fibro and swears by yoga.. I hope to be able to get to it once my arms are fixed.. She says her flares have REALLY cut down, from nearly daily to once or so per month.!

It is hard for others to understand.. Invisible diseases seem to be the worst... Try not to let others make you feel bad, you are your best advocate!.. :hugs:
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Old 11-21-2013, 08:07 PM   #1962
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Hi everybody!

Just a quick check in to see how everyone is doing. Haven't seen our new members on for a bit. Momma are you still waiting for those tests?


I'm soooooooooo tired had a hair appointment today and almost didn't go just to tired to think strait. I missed last weeks appt so I went and glad I did. I go back to Chiro after 2 and half weeks off. Not sure how happy he will be but I'm thrilled that after missing an appt I was able to stretch it out a week and half more. I don't feel I need to go but feel I should as precaution. He wants to try a more advanced technique he feels will help the fibro but I can't afford all those sessions right now so I will go after the new yr when my medical savings account restarts. For some reason they front load the account and all the money is available in Jan so it's my best shot at doing something expensive. We got a bit of good news our insurance went down $120 a year and since we can't get kicked off and don't have a cap our insurance is even better than before. My DH has glaucoma and now his Lyme treatment is super expensive so it was a concern before.hope they get the personal accounts straightened out soon. We have fantastic insurance since the hospital system my DH works for also owns an insurance co. Co pays can be overwhelming only because we have so many of them. We went several years w/o insurance because we couldn't pay for an individual plan so we know what that's like too.


Sending pain free vibe and pixie dust to all.
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Old 11-22-2013, 12:12 AM   #1963
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HI!

Getting our hair done feels so nice, it must make you feel good about yourself!

I am tired also, I caught the dreaded cold that my daughter and husband had. So I look like Rudolph, can't sleep.. UGH..

I went for my bloodtest Monday, and that is when it hit.. I had to cancel the Rheumy, I felt so badly. I went for the CT, and they realized I couldn't stop coughing or sneezing, so they changed that, and then today I get a call to confirm my MRI and later in the day to say it has to be rescheduled lol.. They said I need a special technician as now it will be an Arthogram? An injection into my shoulder and then the MRI, so that is now next week.. Probably best, as it is about 90 minutes, and no way could I stay still..

MY SON GOT ACCEPTED TO COLLEGE .. HE starts in January.. SO SO SO proud of him... He struggles, he took two night courses and excelled, so that helped.. In the past year, he has graduated High School, passed his drivers license, and got a part time job at Mcds'.. Very pleased..

Gentle hugs all around
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Old 11-25-2013, 08:59 AM   #1964
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HI! Getting our hair done feels so nice, it must make you feel good about yourself! I am tired also, I caught the dreaded cold that my daughter and husband had. So I look like Rudolph, can't sleep.. UGH.. I went for my bloodtest Monday, and that is when it hit.. I had to cancel the Rheumy, I felt so badly. I went for the CT, and they realized I couldn't stop coughing or sneezing, so they changed that, and then today I get a call to confirm my MRI and later in the day to say it has to be rescheduled lol.. They said I need a special technician as now it will be an Arthogram? An injection into my shoulder and then the MRI, so that is now next week.. Probably best, as it is about 90 minutes, and no way could I stay still.. MY SON GOT ACCEPTED TO COLLEGE .. HE starts in January.. SO SO SO proud of him... He struggles, he took two night courses and excelled, so that helped.. In the past year, he has graduated High School, passed his drivers license, and got a part time job at Mcds'.. Very pleased.. Gentle hugs all around
Congrats to your son!
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Old 11-26-2013, 01:45 PM   #1965
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Omg a fibro thread!! So glad I found you all! I'm Jess, 24 yo with a two year old. Diagnosed at 21 after a serious injury that lead to rsd after a broken bone.
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