Venting on the attitude of my(soon to be former) Drs.

[ViewsAskew]

The Foundation has legal and manpower issues with doing other than what they do. It's extremely complex. I've been hoping for a new way for over 6 years, but it's just not that easy. I'd love to see a certification.

[ViewsAskew]

Cheryl, searching is an artform. I have to do it a lot for work stuff, so I've gotten OK at it, but it's hard to get what you want all the time - I sometimes nail it, but often have to try many combinations to find what I want.

I think I found the above with "restless legs syndrome new jersey specialist". There were a few others that popped up - two hospitals. But, I couldn't tell about the doctors who were there.

I did another search with "new jersey restless legs treatment" and one of the hits was an article written by several authors about RLS treatment and included in the authorship was Arthur Walters at JFK Medical Center, Edison, and Seton Hall University School of Graduate Medical Education, New Jersey, USA, JFK Medical Center, Edison, and Seton Hall University School of Graduate Medical Education, New Jersey, USA.

Dr Walters had written a LOT about WED/RLS and if he's anywhere in your state, he'd be worth driving to. Or contact him for doctors he knows.

[cmooreinthepines]

Okay...back on the roller coaster..this time going up and around a loop...hang on and scream with excitement.

Got msg another from Dr. B who suggesetd Dr. Walters and a few others. It was late on Friday so I didn't make the calls yet but I have the info..It appears Dr. Walters may have moved to Tennesse, but I have a Jersey #...so I will try it. I copied every place I got a hit, almost out of ink again. I have my HIT list and first thing Monday AM I will hit the phones...Thanks for the search ideas also. I am happy to receive any and all ideas. Dr. B also said I need to find someone soon because it is not good to do what I am doing without Dr. supervision and I agree, but I am proceeding anyway.

I had a serious reality check last night. No tears today, so far. For some reason I had so much energy today, cleaned and washed and cooked up a nice dinner. I even got a call from a friend...I still have one left! She was very sweet and made me smile when she was sharing about her health issues...we are the same age, 48....we kidded each other about getting together for lunch, shopping for orthepidec shoes and on our way home stopping at the drug store to pick up our meds. Too funny. This must be the high after the low, right.

I was just now drifing off to a peaceful slumber, or so I thought... when my daughter comes and wakes me because she got something stuck in her braces and was bleeding..popcorn! I serioulsy wanted to give her a beat down, (I never hit my kid, not even a little spank, no need to because I've got the look, you know that look)...Couldn't help but laugh.... she was so upset over the popcorn you'd have thought it was the end of the world....I helped her rinse it out and then hollered at her to go to bed! with a smile of course..And then I sit down on the couch for just a few minutes, click on the TV....Doris Day and Rock Hudson in Pillow talk...LOL...and then my legs start their nightly dance. So all are asleep and here I am.

I've been reading alot of the older posts here and whom ever it was that said after the physical symptoms manifest...the emotinal ones are bonud to follow, I am finding this to be so true. Oh and...I bet Polar Bear got her name from those icey baths? You are such a nice group of people, too bad we couldn't meet under better circumstances. I have thinking about checking out the chat room...maybe?

Dr B. is awesome!!!!! Who hangs around thier computer on a Friday night answering emails from strangers??? Someone who really must care about us. Wish I could go there, not an option right now. Hope I don't have to, but never say never. Have a good night all...gonna catch the end of that old movie and eat some popcorn

[cmooreinthepines]

That post was the real me, all the time. I am a different person with WED, but thats okay. I am finding my way along this bumpy road. Thanks for your help and kindness. Cheryl

[Polar Bear]

Cheryl, I like the tone of your last couple of posts. Things often seem so much better when you feel you are actually doing something positive.
Yes Dr B is awesome. I have had a response from him over a weekend when no response could have been expected for a few days.

My user name of Polar Bear is nothing to do with my icy foot baths.
http://s00ziq.deviantart.com/art/Ballyg ... -148234712
See the link

[dogeyed]

My dearest Cheryl,
Perhaps I know what is a little off on your new pill regime. You may recall I suggested to NOT take any meds at least a couple hours before bedtime, and this is because opiates CAN keep a person up. But you see, I also take a tranquilizer, and so while I observe the primetime TV start as being the end of my pills for the day, tranqs probably help me. So, as I also said before, maybe you could get you some Melatonin at the health food store, it's natural and it works fine as a sleep aid. It's the same stuff that lights up in our skin when we've been in the sun. I've run across many people in various medical forums that mention it. That way, if you're all revved up from a day of opiates, that will knock you out. ONE MORE TIP, and I'll quit bossing you around, but I keep a pair of knee-high support hose, they fit real tight on my calves, and if I pull them on just before bedtime, they'll stop the RLS just long enough for me to sleep.

I've been taking various medicines for more than ten years for various things, never thought I would, and so I had a learning curve to figure out what in the Sam Hell was going on with them boogers, they can literally take over your whole life. I also carry around some extra weight (gotta get it off), and so my heartbeat gets a little fast, usually when I don't get enough sleep, I'll get that, and so I'll do some deep breathing diff times of the day. Deep breathing is just what it sounds like, and it slows the heart rate, and decreases any irritability. Breathe in really deep, hold it for just a second, blow it all out, breathe normal a few times, then do maybe three or four deep breathing things again.

But sleep is the goal. Anytime you tke opiates, while they CAN give the gift of sleep if pain is the issue, blissful sleep indeed, sometimes they can turn us into cantankerous witches, and Vicodin is a real power kicker. Frequency helps, like I said, I take mine four times a day, but it's a really weak opiate. I also happen to take Lyrica (pregabalin), and that stuff makes me super sleepy after a day of those, I have to not take them sooner than four hours apart, or I'll pass out! Ha! I'm just saying, drugs we take can create some wild and crazy thinking, living, and doings. Oh, one more thing, DO find that phone book, and if you would, look up Internal Medicine docs, find a group practice, and see can you get in there, normally they are just the best doctors, they work as family docs, and they also are excellent diagnosticians. Those guys are so smart, I'll bet they would continue your Vicodin, and in fact may work with you on whatever is needed to make you finally comfortable.
Always, GG

[cmooreinthepines]

It sounded good though..polar bear in an icy bath. LOL.

Last night my husband and I discussed it and I took 1 MG of Clonazepam about an hour before bed and even though I was up for a bit with the bouncing around and my daughter, it didn't last as long...so that worked cause when I did get to sleep, I was in heaven. Woke up a bit groggy...took me a while to snap out of it but as I go along here, learning to work it out. I used to think that big bag of past meds was a curse but now as I learn more about those drugs, I am finding it an advantage during this time of waiting. I make sure my husband knows everything I am doing so if there should be a problem, he is aware of what I have taken and I would not take if he thought it was not okay. Glad to hear your advice/thoughts...no worries about bossing around. I have a pair of those stockings..remind me of those leg warmers from the '80s, LOL...excpet the orthopedic version. Love them and use them. Its all good and I am so greatful for finding a source of credible information and opinons and thoughts from others like me. HUGS! Cheryl

[cmooreinthepines]

So...sleeping okay...it's so hot and steamy here..If it's not one thing its something else huh? I have this awesome fan that I have set on a stool and its about a foot from the edge of my bed. This does several things for me. I think it helps with the mild beginings of body movements and aslo helps keep me cool. And hey for those nights when I my allergies act up, I put some of that vapo rub on my face and let the fan blow right on my face as I sleep. Works awesome.

Wondering how long it will take for this process to be done. I am not going to take clazonepam everynight cause that is some heavy stuff. I have Melatonin and prefer to use that so, maybe I will take turns.

The quest begins again tomorrow can't wait! Thanks again! Hugs, Cheryl

[rthom]

Here to hoping it's better for you tomorrow night!

[cmooreinthepines]

Feeling motivated. Not sure if I'm allowed to post this, I geuss I will find out...

Great website to locate Drs: "healthgrades.com" includes: patient ratings, background, education, age, specialties, hospital affiliations, offices, maps and phone #'s, any sanctions or awards, listed by state and then choose a town. Lots of info and easy to use. I highly reccomend it.

[cmooreinthepines]

I have to say...Its been several days off Mirapex and, for me, I am feeling better in my head...more each day. I am so greatful for this DB...I think I might have been committed by now if it were not for you all. (kinda making a joke but not)

Went to the chat room...no one there? Is there a best time to be there?


Have a great day, and if your not, know that I am thinking of you, where ever you are and hoping it gets better for you!

[Polar Bear]

The chat room is not functional at present.
I have never used it and am not familiar with the mechanics of it but I think it has a lot to do with having a registered member with the time to actually commit to hosting it on a regular basis.
Perhaps Views will correct me in this if necessary

[cmooreinthepines]

Thanks PB...it lets me log in and says best time is 8PM CST..but I chat alone..LOL!

[cmooreinthepines]

It has been a productive day here in NJ...I am feeling good, so far. I made an appointment with the New Jersey Neuroscience Institue in North Jersey where Dr Arthur Walters practiced. He was one of the Drs that Dr B reccomended. Although he is no longer there, I will be seeing someone from the group he worked with! YEA! and that Appt is for 9/10 and I am on the list if an appt becomes available sooner. There's more,... ...since I need the Ferritin serum test, I called my old GP's office and he has written the script for the lab test. So I will have that done...I didn't burn that bridge just in case...I also set up an appointment with him for next week, which is about how long my meds will last..in the hopes I can convince him to extend meds until I get to NJ Neuro Institute on the 10th or the U of Penn appt at the end of Sept. I also did not cancel the appt with my old Neruologist...might go just so someone is keeping an eye on me untill I get to someone who knows what thier doing to keep an eye on me. Maybe not? probably not.. I'll figure that out next week.

Moving my studio down to the basement today because I need a bigger space. I make gem stone Jewelry and other girly stuff. Handbags, backpacks and lipstick purses with draw strings. Re -conditioned jewelry boxes and hand mirrors. I have a few big shows coming up in September and although I have alot of stock, I have not done any work in the last several weeks and this should be my bust a move time. I've been doing this for a few years now, so I am still an ametuer (?)..but each piece I do, I get better. I consider myself more of an artist rather than a crafter and I am not interested in mass production. This is a side endeavor and not what I do for a living, but maybe someday that will change. It keeps my mind and my hands busy especially at night, so its all good. I do very well when I am up to doing the shows. Don't have an online thing going yet, but motivating in that direction.

To All: Hope you are having a good day, and if not, know that I am thinking of you and hoping it gets better for you...sending you hugs! Cheryl

[Polar Bear]

It will be interesting to hear what your ferritin serum level is. Mine was checked last week and it was 87 though I'd like it up nearer 100.
Please remember that doctors and labs may say that a level of around 20 is normal, but this is not so for an RLS/WED sufferer.

Oh.... I notice that you mention the Fab Four in your signature.
I saw them perform in 1964, I was still at school and had to plead with my parents to be allowed to go.