Month: March 2016

So far…

Well kids so far i have had 3 physical therapy sessions and 1 shot of #SynVisc, tomorrow will be shot #2. My right knee has been bothering me only slightly all day and the left is at almost no pain. i still almost have to go one step at a time when going up, downstairs is still normal. Also that spot on my right hand (palm) is starting to come back as it always does about now, so i look and my Stelara is due in a couple weeks The other reason for it is Nancy just made a batch of homemade granola bars (which i cant resist) so i have had some after having zero oatmeal for 2 years since I’m highly allergic to nickel. Speaking of that the clear nail polish that i use to paint over the buttons on my pants also wore off on a couple pairs of jeans and it literally felt like fire burning into my stomach. I mentioned it to Nancy and she said I should sew a piece of cloth over the button, problem solved. My thoughts are to just wear a t-shirt and tuck it  in, no sewing involved, LOL. I guess as i replace my current clothing ill start looking closer to the closures to see if its metal/plastic etc.
OH! Since starting therapy the pain .level in my back has come down a bit too. and i lost about 10 lbs starting just before therapy until now. I’m still a bit overweight but a little less now. Id love to lose 50 lbs, but even 30 would put me in alot better place.
In other news, ive joined up with as well as the IFAA, the latter of which will entail working with other patients to better help in our treatments etc. Ill write more about it later i dont want to say too much about it, until i know exactly what i can and cant say. What i can say is that im really excited to be a part of this project as it can potentially change our future. Since the way research and medicine has been done/created in the past had nothing to do with the patient, this should change the future of medicine 100% as did  the way scientists recently collaborated in coming up with Alzheimer’s meds. In the past each pharma researched and created their medicines in secret from the others, each in a race to come up with something to help the disease or whatever at hand. Since the effects of Alzheimer’s are so devastating the worlds scientists have all worked together on this project pooling data together, and they are light years ahead of where they would’ve been by going at it alone. Hopefully this will help shape future research projects.
Another item to note is how the NPF has brought us patients together with the researchers/scientists studying Psoriasis and Psoriatic Arthritis, at the National Volunteer Conference in San Francisco last summer. We learned from the researchers, and they learned from us. Did they know beforehand that the heat and itch from the Psoriasis could keep us from sleeping for days on end? No, not before talking to us they didn’t. Now they develop or tell doctors to prescribe something that will help there as well. Did they know about the suicidal thoughts many of us have when we are at our worst? No, how would they know that? Guess what? We asked to have doctors ask if the newly diagnosed patients would like a referral for additional help.
Thoughts? Comments? I would LOVE to hear from you, ALL of you. Have a beautiful week, see you Sunday!