*** Handy Hints, Links, Tips, Files, Notes and References for All ***

[Kentucky_Girl]

We've been talking about a thread where we add all the very cool links, tips, references, tricks, etc that we discuss and talk about and would like to have handy when it comes up again a few weeks later. So, I've started a thread and have a few things I'd like to add right away.

I'm sure there are some older threads that it would be great to have a link referring to them since some things come up often and there are already a few threads with really great information.

Hopefully, we can add and this thread will grow and have so many cool things that it will become the best guide on the web. LOL We already know this is the smartest group of people on the web.

[Kentucky_Girl]

http://www.rehabmart.com/category/Dressing_Aids.htm

this is a website called Rehab Mart. it has just about every home helper and dressing aid you can imagine. i couldn't believe all the grabbers, sock aids, long handle shoe horns, zipper pulls, button hooks and even lotion applicators!

i'm sure many of these products are available in our local drug stores, wal-marts or medical supply stores but here we can see just what is available to help us on those days when the fingers are really stiff or the back just doesn't want to bend.

have fun looking. i did!

[Kentucky_Girl]

http://www.painfoundation.org/learn/...etNotebook.pdf

http://www.painfoundation.org/learn/...-notebook.html

this is a link to a chronic pain notebook. the notebook has pages to keep track of your pain. the quality, quantity, location, what you were doing, what relieved your pain or made it worse and more.

the first link is to the actual notebook itself, in PDF form. the second link is the to page on the Pain Foundation where the notebook is found. there are other links to print out more of the individual pages.

this is a great notebook for keeping track of what you need to tell your doctor or questions you want to ask. it has places for questions and even suggests questions that you might want to ask. there is a place for you list your medications. and it prompts for you questions about medications.

for those newly diagnosed or those who are having new issues or concerns, this looks like a great tool!

[-C-]

Here's a small review of two pain tracking apps for the iPhone -> http://talkpsoriasis.org/showthread....(picture-heavy)



I vote this thread becoms a sticky :thumbs up:

[Kentucky_Girl]

http://www.arthritistoday.org/treatm...edications.php

this link is to Arthritis Today at the Arthritis Foundation. it's a medication chart that matches the meds to the type of arthritis. you scroll down to PsA then click on the type of drug and it shows you a list of all the different types.

for some reason pain meds (analgesics) are not listed under PsA. you can either go back to the main drug guide page for those or simply click on analgesics under RA.

[Kentucky_Girl]

http://www.housefairy.org/

this is one is for the kiddies. the house fairy is like santa clause. she comes in the night and inspects the child's room. she doesn't leave a major haul like santa clause does though. instead she motivates with other little ideas. for younger kids, this is a jackpot of an idea!

http://www.shesintouch.com/

sidetracked home executives (that's me!) i'm sure many of you have heard of this card file system. for those of us without much energy or aches and pains that stop of from getting things done, it's a neat idea.

http://www.flylady.net/

another system that was based on the sidetracked home executives. a little different in the way it works, no card file. some like this one better because it uses lists and notebook. again, helpful for anyone not feeling like getting anything done.

[debbieleft]

Here is a thread on bio meds now approved and in the works:

http://talkpsoriasis.org/showthread....ks.&highlight=

and
www.fitday.com
is a good site to track your eating, nutrition, general health and such that is free.

be well all!
deb

[Kentucky_Girl]

http://www.neuroanatomy.wisc.edu/SCl...hy.htm#sciatic

this website is actually a textbook so it's pretty neat. there are maps included that show you which nerve roots control/affect/deliver to which muscles.

there are other very good pictures included that show you the different way sciatic pain can feel based on where exactly it is coming from. same thing for compression of nerve roots in the cervical spine and how it can feel in the arm.

other pages leading off of this one look just as informative and interesting. i could be busy studying all day.

[debbieleft]

Pain syndromes in Rheumatology

http://www.uctv.tv/search-details.as...subject=health

she goes into PsA at about 30 minutes, but the whole thing is worth watching. It really hits the necessity to treat the disease early.
This is for the medical community but isn't too difficult to understand IMHO. I stopped it a googled any word/phrase I was uncertain of.

Programs on Arthritis:
http://www.uctv.tv/search-moreresult...subject=health
two good ones on RA that are a good start on understanding some of the actions of PsA.

[debbieleft]

From another thread.....

Sulindac is a commonly perscribed NSAID. It's supposed to be easier on the stomach then most others. I have taken it a few times in the past for non-arthritic conditions and had no problems. On a side note, I believe I read in a recent article that Sulindac can actually kill cancer too!! It said Sulindac caused cancer cells to commit suicide. One doc said the effect Sulidac had on cancer cells was the most amazing thing he had ever seen. Now, if my memory has failed me and this story is unfounded please forgive me.

Here is an article on the cancer killing properties
http://www.cbsnews.com/8301-504763_1...-10391704.html

[timlovett]

Hey Kentucky girl thanks for starting this thread.. I was looking for it after you mentioned a hints and tips thread and wow its got a lot of good information in it.. It can be very hard to find a list of medicines and study them so I am looking into that link now...

Thanks.

[Kentucky_Girl]

this was posted by tim in another thread and i think it is one of the best things i have read in a long time for explaining the feelings we go through when hit hard with a bad flare, or when first diagnosed, or when family and friends just don't understand and want us to "walk it off".

thanks tim, for sharing your thoughts and putting into words what so many of us have felt.

You know when I googled PA I also remember reading that it was mild. I was very relieved at first. I thought thank goodness its not RA or Lupus, Because believe me I was swollen up like a freaking blowfish in my entire body.. They had to cut my wedding band off to do an x ray.

On my first visit my rheumy said that he really wanted to put me on remicade right away and I said no way I am doing anything that requires needles lol... So he put me on nsaids and a couple other things... Every time I went in after that he started pushing the enbrel because my pain and swelling were not improving he pointed out that the swelling was a lot more dangerous that I realized and that I could get joint damage as quickly as 3 months...

So I went to the enbrel and thats when I started allowing needles...

Also I want to add this I was trying to go back to school because I have always done manual labor and used my body and arms a lot all day... It was too painful to endure so when going to school the counselor was looking for ways to help me pay for it... and they sent me to a state agency where a state Dr. examined me to determine eligibility for assistance..

Sorry long story short he looked at me and said I am so sorry you are so young to have PA.. He said my brother has it and hasnt been able to get out of the bed in years because its ruined his back... Then he said to me , "make sure you treat this immediately.....

I have been through the whole ordeal of most of my family parents , siblings and so on saying push through it get over it and there are even times when I start to doubt its as bad as it is and I try to make myself do things. But the pain in those knees and the stiff type pain thats in almost every joint in my body quickly reminds me I am very sick... As does the extreme shortness of breathe I get when I try to get going...

The real truth is PA CAN be mild. So can balding. Some men loose all their hair some loose just half , some just thin... it varies from man to man. Thats how PA is there are plenty of mild cases and there are plenty of us suffering terribly at the hands of this crap every day.

So keep your head up and freak em all.

[EE]

http://www.amazon.com/Psoriatic-Arth.../dp/0199231222

Great book for beginner's on Psoriatic Arthritis I have recommended several times on these boards. It's available through Amazon. My Rhuemy knows the author and thinks highly of the work they are doing with PsA. I thought I would add the link to this thread! Great idea to start the thread :-).

[ladykahu]

Pain syndromes in Rheumatology

http://www.uctv.tv/search-details.as...subject=health

she goes into PsA at about 30 minutes, but the whole thing is worth watching. It really hits the necessity to treat the disease early.
This is for the medical community but isn't too difficult to understand IMHO. I stopped it a googled any word/phrase I was uncertain of.

Programs on Arthritis:
http://www.uctv.tv/search-moreresult...subject=health
two good ones on RA that are a good start on understanding some of the actions of PsA.

Bumping this thread a bit.. wish the mods would sticky it!!

Also wanted to say I found these clips really interesting, going to talk to my rhuemy about them for her opionion on wed when I see her.
Natalie

[Kentucky_Girl]

the following links are to various medications trackers. with all the different medications for PsA, and having to try one and then another, it is hard to remember what side effects one might have caused or which ones we have tried. especially after a number of years. i didn't think to do this in the beginning and now i find myself sometimes wondering if i have tried a certain drug before or if i am remembering correctly. i'd recommend starting out using something like this to track not only what meds you are taking now, but which meds you have tried and the result.

http://www.consumerreports.org/healt...cker/index.htm

http://www.softwaregeek.com/windows-...eeware/p1.html

http://mysite.verizon.net/tss2718/medsched/index.htm

http://www.doh.wa.gov/cfh/mch/Epilep.../WalletMed.pdf

http://www.mnpatientsafety.org/ (bottom right corner of this page has a link to a really good sheet to download and print that you just fill out with a pen as you go)

i think the first and last are my favorites.

[Kentucky_Girl]

we've all seen them, those pain charts in the doctor's office or clinics and even emergency rooms with the little smiley faces on them. the first one starts out with a smile and the next one is a straight line. it progresses to a frown and tears. come on, really? how many times have you looked at that thing and wished it showed how you really felt.

this gal has written a pain chart that is actually accurate. i love it! it has a curse word or two in it that i wasn't crazy about at first but you know, pain makes me say things i don't usually say. i'm no gosh darn girl but there are a few i was taught that ladies don't say. i do seem to remember the last few times i dropped that bomb it was in response to pain. so if it belongs anywhere, pain is where.

i know you will find this as funny and appreciate it as much as i did.

http://hyperboleandahalf.blogspot.co...-probably.html

[DanielEW]

i know you will find this as funny and appreciate it as much as i did.

Both were true for me. Thanks for the morning laugh.

[Kentucky_Girl]

What Causes Progression of Psoriasis to Psoriatic Arthritis?
Saturday April 24, 2010

Injury, heavy lifting, severe infection, or other trauma are risk factors associated with the progression of psoriasis to psoriatic arthritis, according to a study presented at the annual meeting of the Canadian Rheumatology Association and reported in the April 2010 issue of Rheumatology News. The study compared 159 patients who had psoriatic arthritis with 159 control patients who had psoriasis alone for the purpose of identifying risk factors that explained the progression.

The first strongest risk factor was a history of infection requiring hospitalization. The second significant risk factor was occupational exposure -- work involving cumulative lifting and pushing. The third risk factor was any injury requiring medical attention.

No risk was found from exposure to immunizations or from psychological stress. Smoking was actually associated with decreased risk of progressing from psoriasis to psoriatic arthritis. Researchers emphasized that this is a preliminary report and more study is needed. It is unlikely that the progression can be explained only by environmental factors. Genetic factors also likely play a role.

http://arthritis.about.com/b/2010/04...-arthritis.htm

[Kentucky_Girl]

http://www.medicinenet.com/script/ma...ticlekey=40222

this is an older article (2004/05) with information about medications for spondylitis in Psoriatic Arthritis and Ankylosis Spondyltis but still valid. unfortunately, methotrexate and other DMARDs have been shown NOT to be effective for spinal arthritis.

good article with links to other information also

[clareb]

Wow, there is some really great info here. I hope this thread gets made into a sticky ...

Loved the new pain chart, I laughed like a drain ... hehehehe

Here is something I found on managing fatigue, which seems like it has some good ideas. Anyone else found anything useful regarding fatigue?

http://www.orthop.washington.edu/uw/...s/Default.aspx

Hope you are having a good weekend
hugs, Clare

[heidi]

Wow, there is some really great info here. I hope this thread gets made into a sticky ...

Loved the new pain chart, I laughed like a drain ... hehehehe

Here is something I found on managing fatigue, which seems like it has some good ideas. Anyone else found anything useful regarding fatigue?

http://www.orthop.washington.edu/uw/...s/Default.aspx

Hope you are having a good weekend
hugs, Clare

I was going to say the arthritis foundation has a great pamplet on fatigue...then I went and read your link. It was almost exactly like the pamplet I was going to suggest then realized it was the pamplet adapted by UW.

[clareb]

Thanks Heidi

I'll check out the original, too
C

[DEBAK]

Wow I had to read thru all the posts first and now go back and start clicking on links...decisions....decisions....where to start? Great thread!

[Kentucky_Girl]

the spoon theory written by christine miserandino has to be one of the very best ways ever thought of or written about to explain living with chronic illness.

when you are newly diagnosed, reading this story will help just to understand your own body and how to deal with "flares" and fatigue. then it becomes invaluable for explaining to close family and friends.

thankfully, with PsA, not every day is like this. when the disease is well under control with meds, life can be normal again. but during flares or for those more severely affected, the spoon theory can be a useful tool.

i've attached both a link to the story on the web and the story in pdf format so that it can be easily printed.

http://www.butyoudontlooksick.com/ar...e-miserandino/

link to the story in pdf format for printing (google documents)
https://docs.google.com/leaf?id=0B0l...thkey=CM20pKYO