You are so right, Chris! It is easy to be completely freaked out when reading forums, but I am here for support because my disease sucks right now. If you are doing well, the last place you want to be is here.
Good luck with the Psoriasis; it sounds like you have a nasty case of it. I had symptoms for YEARS before I had PsA sx. Mine responded almost immediately to Humira. I started to shed plaques after the first injection. In fact, even when I had to stop for a month, it didn’t come back. The derm gave me some good topicals, my favorite is Taclonex. It is a blend of Dovonex and betamethasone. It works really well especially if you request the ointment. It is pricey without insurance, but there is Rx assistance available from the drug company. Also, if you get a good derm, like mine, they have buckets of samples. I always leave with a bag of freebies to try. Also, get some cotton gloves and thick cream to use before bed. It kept my skin from cracking in the winter. And don’t forget to protect yourself when you have open cracks. Now that hospital acquired infections have made their way in the community, you can never be too safe. Get some transparent coverings from the pharmacy to cover the cracks. They are great, because you can cut them to size, they adhere well, are water resistant and flexible.
Good luck!
Chris said:
It's a very unpredictable disease. For many people it's mild and stays mild. For a few like me, it starts severe and then settles down. Or like in my case it goes away completely. And unfortunately some patients continue to progress to complete disability. There are several prognosis factors that may give insight to whether or not your disease will be mild or severe but even those basically guess work. As for P along w/ PsA, again totally unpredictable. Most people have P first and then later on (sometimes 10 or 20 years later) develop arthritis. Sometimes they both present at the same time. And sometimes, like me, it's arthritis first followed by P.
Now here's something very important for you to keep in mind. When I first got PsA I got on the internet like you and was shocked at some of the horror stories I was reading. It was depressing and the future looked very bleak. But then it hit me that the internet and boards like these often represent the very worst case scenarios. These types of boards are filled with a lot of people who are struggling, need support, and generally have severe symptoms. There's a large percentage of PsA'ers who are doing just fine and leading completely normal lives. When I was struggling with PsA I was on these types of boards all the time looking for support. Since I've been in remission the last 14 months or so I have not Googled "psoriatic arthritis" one single time. It's just not on my mind anymore. I found this site while looking for information on Psoriasis and was intrigued that there was now a board dedicated to just PA. Anyways, point is, don't panic or get yourself depressed. Chances are greatly in your favor that you will be perfectly fine. Just like Phil Mickelson! :)
@Kristen. I know that nurses can "Eat thier young" but what is being done to at work to make it stressful for you? Should I not let folks at work know about this new dx? I worked in the ER for 16 years and remember how stressful it was. I didn't even think about being immunosupressed and working around MRSA and all the other crude we have. Thankfully I now do open hearts so most of my patients are infection free. I'm sorry if it seemed that I took over your post as I didn't intend too. I work night shift however it's only 2 12 hour shifts a week. This allows me to keep my insurance. Keep us posted on your decision.
@ Jodi Ann, Thanks for the advise of not letting them "push you out" I so need my insurance as I have heard this Humira is expensive so I really need my job"
@Chris, Good advice on the blogs. All of this is new to me so I'm looking for folks that can lead me in the right paths however I do understand that there are contless scores of folks doing very well with this illness. I have limited myself to one hour a day on line looking up stuff. I'm too tired to do anymore anyway.
@Grumpy cat, the dermatologist gave me samples of Taclonex for my nails. We will see how many I can keep.
Hi,
I am a nurse too and used to work in ICU. I completely understand the pressure of the work and wanting to do your best but feeling hindered by personal health.
Well done or going back to work, I think it’s amazing!! Sadly, co workers ( especially here in the NHS!) are not always supportive and view people who need special working patterns or support as a threat or being favoured. Just remember that you are doing your absolute best, when a lot of people would never want to return to work, and living with PsA is so incredibly difficult.
Good luck, and remember that you are amazing- even when others try to tell you otherwise!
X
The thing that I found so frustrating, that my colleagues of a lower banding than me have been wonderful (I'm in Haemodialysis) but the management, who are all nurses and nurse background, are very dismissive and act like I am a waste of space sometimes. I have been in my work area for 10 years with an extremely good sickness record until last year, I run my bay without any additional help, I complete all my work in my allocated work hours as well as mentor junior staff and student nurses with in my work day. I reduced my hours from 37.5 to 33 last year, the only thing I need is to have is a needling chair so I don't have to stand for too long. We work 3 long shifts a week, with I work alternative days but I do have the option to do shorter shifts and more days but I find that worse than a long shift with a day off in between. I do do the late shift which finishes at 21.30 and normally over runs to 22.00 but find that really hard going.
I have changed the way I do things within the work place and at home ......I've adapted. I'm also in the process of developing a thicker skin and a harder attitude towards my management. I have pointed out to my matron that the NHS is in a process of trying to develop and measure compassion with in its nurses (insulting I know!) and how can she do this when she doesn't appear to understand the concept of compassion and empathy.......I was in considerable pain at the time and think that gave me the balls to let what was in my mind out lol.
I understand what your going through and I keep telling myself it is their problem not mine, Know that you are efficient, compassionate, work well and keep your patients care foremost in your mind at all times. As long as you know that, they can not get inside your head and undermine you and make you doubt yourself.