Category: Psoriasis Psoriatic Arthritis

WEGO Health!!

I have been nominated for Hero and Humorous Health Activist awards!!

 

I LOVE YOU GUYS!

 

If you havent voted already please endorse me HERE

and vote for others HERE

 

thank you from the bottom of my heart!

Yesterday

I was talking to a friend on twitter, and she asked about doctors. She used to live in this area and it seemed like she couldn’t find good doctors. I told her i travel 1 hour to Verona, NJ for my dermatologist and it’s worth the trip knowing this guy is an ace. Dr Robert Nossa  is my dermatologist he has written many things in medical journals etc, and can be found at the above link. Why do i speak so highly of him? He thinks outside the box.

Let me explain.

Stepping back a few years (2012-ish) i had realized i had PsA (Psoriatic Arthritis) i had asked my then dermatologist for Stelara, she said it was too new they stick to ‘tried and true drugs’ i thought ok…. wrong answer. So i see an ad for a clinical trial, long story short i went a couple times and was turned down. Why? the first time because i was clear, i had been using the steroids just prior and was very clear. So i said you know if i stop ill be back in 2 months with a mess. The doc said i can’t tell you to do that, i said ok. About 2-3 months later i emailed a picture, i was asked to come in the next day. Well i was declined again, why? My Psoriasis is only on my hands. Yes im 1 in a million. This doesn’t make it any more or less horrible, i feel lucky that’s all thats affected (besides some inverse in the groin region). Anyway….. they needed it somewhere else for the study. I huffed as i said ok thank you anyway. The Doc said you know i can see you as a patient, “If you want” , i said id love that. 20 minutes later after signing in as a new patient i was there consulting with the doctor. In the initial consultation, he said he would like to try me on ither Stelara or Enbrel as those are the 2 drugs he has the best success with. About 2 weeks later i received a letter from the insurance company indicating i was approved for 2 years, i swear if i could do backflips i would’ve been doing them all over town.

Fast forward 1.5 years.  I went in for a normal visit, like i do every 90 days, and got my shot doc looked at my hands and the right hand almost never clears. He said “i don’t get it. Stelara works you should be 100% clear now. Hmmm there’s got to be ….”, he paused for .5 a second and said, “Have you ever had an allergy test?” i said well yea, about 100 years ago. “would you mind having one?, you may have an allergy, like nickel, and when you touch something its coming up as contact dermatitis on 1 hand” no, not at all. This was wednesday. The following monday i went back and guess what? im highly allergic to nickel. he said “Well i don’t see this as being this bad unless you… ate oatmeal everyday”, i said, Doc. i have high blood pressure, high cholesterol, the only way to keep it in check without medicines is to eat oatmeal every single day which is what ive been doing for about 3 years now. We all laughed, and i stopped the oatmeal, now im on more meds and my hand only acts up when i eat something high in nickel. Kale, spinach, etc.

You see? He doesnt give up he mentioned the nickel and the oatmeal before i said a word. Hes spot on.

So there you have it.

My Rheumatologist

I just asked my Rheumatologist if i should try one of the newer drugs, like Talz, or Cosentyx, but he said no, wait. The Stelara is working as long as it is don’t switch. If/when it stops we will investigate other drugs. Well he has a point. With my prior Rheumy i tried to get onto Otezla but the insurance denied it. I could’ve fought and got approval but decided to wait. My previous Rheumy had a stroke and i had to find a new doc.

New doc is young and on twitter. Cool huh?.

 

Well i think i’ll end this for now. There was something else i wanted to write about, when i remember i’ll come back and post it. For now if you have any questions/comments, i would LOVE to hear from you.

Have a beautiful day!

 

jim

Another Neurologist visit

Yep saw the doc this afternoon, remember when i posted this last december? Neuro Visit

The letter said they saw NO aneurysm. Ok so the doc read the report to me, and explained a little bit that i didn’t know and i’ll share here. an MRA can only detect an Aneurysm that is 2-3 mm in size. So they saw it the first time. The only worry when it gets to about 7-8 mm.The second MRA didn’t see it as it may have shrunk. I thought i had nothing to worry about however, it’s still there. We assume that because my blood pressure was sky high the first time around, and more normal the second time around it’s ok. Its shrunk and we don’t see it. So i must make sure to keep watching the blood pressure and keep it in check.

Also he gave me a few warning signs. If i get a thunderclap headache, that is it comes on super strong in the beginning rather than coming on slowly, goto the hospital. Also if one pupil is huge and the other is small, goto the hospital. Both are signs of the aneurysm either growing or leaking.

The only way we can say its clear/gone is to have a CAT scan. This comes with issues, first if he does it and there IS an issue i have to goto a specialized hospital and have it done again and they will fix it then and there. They don’t want to do too many CAT scans as #1 it exposes the brain to a lot of radiation. #2 the chemical dyes they use can cause cancer with continued use.

Last but not least, he doesn’t think this will be an issue as long as i keep the blood pressure down, probably less than 1 % chance anything will come of it. I hope he’s right.

That was quick…..

Spent a week on Ulster heights lake. A week. Damn it flew by, now I’m off to take my 16yo to the mall for school clothes oh yay. Lol, I would much rather spend today resting but she needed me to bring her. Tomorrow will be here soon enough hopefully I’ll get some rest then.

Should be a nice warm day about 80+. With today being on the cooler side it’s in the 70s, perfect sleeping weather, lol, sleeping on the patio that is. 😉

MRI Results

Well kids my MRI results are in. I saw the doctor on friday. 

Nice huh? This is why i cant stand for more than 10 minutes. I cant wash the dishes, i have to take a break or 2. Cooking dinner? Yes even if i pull a 30 minute meal from Rachael Ray i still need to make it a 50 minute meal as i need to sit in the middle. Doc said hows the Tramadol? I said its doing well. He promply called in a refill and said if it gets worse we can give you an epidural. Thats the backup plan. Oh yaay.

Ill write more later. I promise im on vacation this week and next,so yea. 🙂

YOU are Beautiful

I work for ascena retail in IT and i sit at dressbarns office. thier motto is to help women ‘look and feel beautiful’

The other day i was helping an admin setup a laptop and video to be played in a conference room and later for a much larger audience. The video below was for the smaller audience. I saw the first 30 seconds and asked if she would share the link with me as it really hits home.

You are beautiful – How much women are criticized for their looks:

https://www.youtube.com/watch?v=WWTRwj9t-vU

Presents what women are fed from the media http://therepresentationproject.org/film/miss-representation/

Have you seen my friend Fred’s video?

My Skin is on Fire https://www.youtube.com/watch?v=H1sYPdp9D4k

or my other friend Rena?  http://www.exposed-film.co.uk/about-exposed/rena-ramani

Please watch these videos, you will learn alot, both about the diseases i have, and about the community i am a huge part of. In Renas video her doctor has professional makeup put on so it appears as though he too has Psoriasis, he goes out in public like that and well… You’ll see what many of us deal with everyday.

:

Thank you!

As an IT guy my responsibilities start at 8 a.m. and end at 5 p.m. I don’t have to work other than that. I don’t have to work on the weekends however I tried to help every opportunity I have if someone needs a little help on the weekend or at 3 a.m. I have no problem spending two minutes to help them. 2 weeks ago a friend was locked out i unlocked her and she asked since I’m in Asia is there anything that you would like? I said I love Chinese tea I’m willing to pay. She said no this is my treat and this is what she brought me just want to say thank you Lisa I truly appreciate it.

Psoriasis Awareness Month

Tomorrow starts Psoriasis Awareness Month , also known as August  😉 . Each week the National Psoriasis Foundation will post another challenge, i hope your ready to compete! Whether you have Psoriasis PSoriatic Arthritis both or none im sure these challenged will be fun, so first thing tomorrow morning go HERE! and sign up!! Good luck to all!

Another wasted day

woke up and puttered around a bit, fell asleep on the couch, woke up now its too late to really do anything. Sat around looking at fakebook reading emails, yep time to make dinner soon. Damn rain makes me feel like crap.