When i received my first ISA (International Symbol of Access) badge for my car, it was a temp and red and showed the wheelchair, the newer more modern design that i received in November 2016 shows a person moving in the chair. I like the newer design much more as it shows activity rather than someone stuck there. I wondered when it changed so i looked it up here. https://en.wikipedia.org/wiki/International_Symbol_of_Access and now i am angry as the ISO
7001 thats in charge of these symbols has rejected the newer image. As a person with a permanent disability would like to vote and have my say so.
its hard to believe another year has passed, it was here and now its almost gone. It was a good year overall. It started off on a bittersweet note, after splitting up with my girlfriend of 13 years, it was sad but i was also happy to be able to spread my wings and breathe some fresh air for a change.
In 2017 i went to congress to as for money to be allocated for the CDC, went to a truly phenomenal HealthEVoices.com event in beautiful Chicago, had some awesome Lou Malnati’s pizza, then returned to the same hotel for the National Psoriasis Foundations volunteer conference, and tried Giordanos pizza as well. According to my palate Lou takes the pie. They were both excellent pies but i truly loved the crust on Lou’s butter crust pie. Met up with my Psoriatic family “I know PsO”, volunteered at the NPF’s bike ride as well as the walk, attended a world psoriasis day event…. Im sure i did more but thats all i can think of at the moment, and i cant wait to do it all over again this year, plus more!
December 30th was an awful day. i woke up about 4am and couldn’t fall asleep. i had planned on doing so much this weekend as on the 8th i am getting my 2nd epidural (1st one was Feb 20th so not too bad)
I have been able to strengthen my back somewhat since the 1st one so i am feeling better but not 100%. I can now stand at the sink a little longer maybe? And since i have a standing desk and standing chair a the office i have literally stood all day just sitting to eat breakfast and lunch.
Anyway i got up made breakfast (i actually sat at the stove while making sausage/eggs) as i have no energy. Every joint ever muscle everything ached. God i HATE PsA, When the fatigue sets in you are done. And try explaining this to someone who doesn’t have it. NO ONE understands. I napped after breakfast then napped after napping. I ate lunch and just sat there watching TV. I finally showered about 4 and was ready for another nap. Sounds like fun huh?
I felt totally useless all day. Hence this post today.
If you have PsA, how do you manage these days?
i was in the office friday when a co-worker approached me. “I see on your facebook profile, something about Psoriasis, do you have it?”, she asked. Yes, yes i do was the reply , we must talk, ill be back later she said.
I have worked with this girl for about 5 years now and this was the 1st time we talked about Psoriasis. i first explained that i am an advocate, mentor, and that i have worked with the pharmaceuticals to help make our world a better place. She then removed the sweater she was wearing over the short sleeved top, and there she showed me her arms all covered. So typical, that everyone hides their P, i had no idea she had it until she approached me. She asked about the medicines i use etc then said she wants to modify her diet rather than use the medicines. I assured her that it works for some people, not everyone, and said that i am one of those especially since i have a nickel allergy. She says, you too?! both of us were shocked. How crazy huh? So i started talking about how we discovered my allergy and how it affects me. I eat oatmeal everyday my right hand becomes inflamed gets the rash, cracks, peels, bleeds. I stay away from Oatmeal, Kale, Spinach and other foods that are high in nickel and im fine. (the Stelara will keep me clear as long as i dont overdo the nickel.)
I then told her about Selectivor.com , they have an app plus website access for those of us with food allergies or sensitivities. When in a restaurant or shopping i can open the app and clearly see what foods are or and which are really bad for me. Plus i can share my profile and others can share with me (like my daughter and i share) so we are sure what we can make for each other. This gets “Best app of the year” vote from me.
1 awesome dermatologist + 1 shot Stelara = 1 happy patient! (Repeat quarterly)
Since getting on Stelara 4 years ago i have been 100% clear 90+ % of the time. They few times i havent were due to me getting close to the 90 days or the atopic dermatitis caused by my allergy to nickel (it looks ALOT like Psoriasis but with a huge difference, that its only on 1 hand not both)
I also saw my Rheumatologist on monday as well and he sees 0 inflammation on my blood markers. This is extra awesome to me as that means my joints arent deteriorating as fast as the would without the Stelara. Man if i praise Stelara alot its because when i started on it, it was the latest and greatest drug on the market, and here 4 years later its still a super awesome drug.
And a little disclaimer here, although i have worked and will continue to work with Janssen Pharmaceuticals (maker of Stelara) all this praise has nothing to do with that. My opinions in my blog are just that, mine. If i try something and it sucks. I will tell you plain and simple.
I was recently asked to try a new toothbrush (ClickHere) They are amazing! Made of natural bristles, when you are done brushing your teeth have that just cleaned feeling of being squeaky clean! Absolutely amazing i love these things they are better than my electric toothbrush!
Wow check this out https://plus.google.com/+JimSnedden/posts/Xzr54hVPyuG
4 years ago i posted that i was on Stelara for only 1 week and it was starting to clear my Psoriasis. Here it is 4 years later and im 100% clear. If you have read my blog then you know that Dr Nossa is the other half of this incredible journey to clear. He refused to believe that Stelara wasnt clearing me 100% and tested me for allergies. After the nickel allergy was discovered i quit oatmeal and ive been 100% ever since. I have since found that a bowl here or there is ok provided i dont have alot of the other things that are high in nickel such as Granola , Carrots, Kale, Spinach, you know all the good stuff.
I am reflecting on this as tomorrow is World Psoriasis Day and i have an awesome reason to be thankful. Ill be celebrating at the Marriott in Teaneck NJ, please check my twitter feed @NPFjim if you wish to attend, and meet me and some of my flaky pfamily.
well i think that may have been easier. i woke up friday morning and my back hurt. jumped thru the shower and i was feeling much better. started out the door and OWW! its my lower back and my right hip, damn sooooo much pain. i had 1 guy out of work and 1 leaving at noon so i went in anyway. i made it thru the day then after work went home. my daughter needed a ride to the homecoming game so i dropped her and a friend off went home and passed out. Saturday morning i was in ALOT of pain. I remembered Julie read julies blog here (my PsO sister) had talked so much about doTerra deep blue amazon link that i bought a tube. OMIGOD. Within a couple hours i was able to move around and i was feeling better, this stuff truly IS amazing. Woke up this morning showered didnt waste anytime getting more deep blue on my back. my knee is bothering me today too so guess whats on there? Yep i stink like menthol today, but its so worth it. 🙂
No doubt Saturday is now my favorite day of the week. I have been on my CPAP now for 1 month and im doing great! No more needing naps all day Saturday im up and active, im loving this!
So i figured its getting cooler now its time to pull the AC out of the window. I can always throw the fan in or just open the windows if it gets too warm anyway. So i pulled it out threw it in the closet with some t-shirts that i probably wont be wearing now thats its cooler. I really have too many anyway but hey. Anyway fast forward to dinnertime. I fry up some mushrooms and onions then throw the steak on, i know i have a couple minutes so i run the garbage out and grab the mail, whats this? A small fedex package from New Jersey? Gil? OMG! My buddy from LEO Pharmaceuticals! I told him at the National Psoriasis Foundations Volunteer Conference in Chicago in August that i loved his shirt and i wanted one. Guess what? Yes this is it!
Thank you Gil, I cant wait to see you guys on World Psoriasis Day!!!
got to love these guys/girls, especially when they call me out by name!! click here: i met them at the NPF Volunteer Conference in Chicago. They put on a great show, the had people from Second City television there, awesome!!