Month: December 2017

Some days aren’t worth opening your eyes

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?

 

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Its such a small world!

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.

Stelara Day!

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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.