So I have been trying to return to work for a year now. I was an ICU nurse. We only have combined nights and days schedule and my doc and Rheumy have said no nights. So I am currently in a holding pattern. Thank The Lord my employer has a mandatory work accommodation policy. I am currently working some day 8’s in the unit, a few in ER, and some teaching and office work. I am on Remicade every 4 weeks and as each month at the end of the cycle it gets pretty bad. I am torn. My doc wants to cut my hours ( I have gotten up to 8hrs a day 5 days a week). And I want to keep trying. I am unsure of whether it is just wishful thinking. I loved my job and I kills me to have to step away from it but, I want to keep a family life as well. I have two young kids. Sometimes I just want to give up as my coworkers are actually making it very stressful to keep working. Why??? It is not like my brain is defective, just my joints! I have worked in this unit a long while and have lots of certifications and have in fact oriented a lot of these staff members, now it is like I am defective and addled. I am on Avara as well as at least 10 other assorted drugs. When does this get better. I am afraid if I give up working I will not be able to a) afford life b) stay a productive member of the work force.
I guess I am more whining than anything as I am sure you all are facing the same issues. How do you all stay positive and keep moving forward with work life and not throttle people or throw in the towel.
Hey Kirsten, Taking one less shift or going part-time isn't quiting. It could be temporary. You could try a less active position in the same field also.
I, unfortunatly, had to deal with this also. I did landscape/tree work for 10+ years after I was diagnosed. I had to stop. I tried to do apartment maintenence for a couple years and then that became too hard. I haven't worked for a year and it sucks bad!!
I try to find humor in life. I remind myself it's not anyones fault. And, I just keep trying I guess. Throwing in the towel is kinda hard anyway! First you have to find the ambition, bend over, pick it up with your sore hands and, toss it. I'm afraid I'll throw my arm or back further than the towel!
Haha! Thanks. I need a laugh. You forgot to mention when you bend over you might not be able to bend back up.
On the contrary...my mind is a finely tuned and well oiled machine! Not getting back up wasn't even an option!
Okay. I forgot.
kristen,
hey i was diagnosed about 3 yrs ago with psa and at that time my roomy said not to work the arthritis an leasions were just too much anyways i didnt want to leave my job i ended up getting fired bc they said i couldnt have all the open sores an im allergic to bandages so they make the sores worse. I worked at walmart prior to this for almost 4 yrs they still called me in the back an said due to my health problems i cant work there anymore!! i begged to keep my job bc i have no other income! I was terrified bc i have two small babies an lots of bills! Anyways this all happened a lil over a yr ago now an since then i have gotten epilepsy and fibromyalgia and have bin to other doctors for opther opinoins they all said pretty much the same thing i have tried seeking socail security and they have denied me twice so far my lawyer says bc of my age im 25 an have so many health issues for my age its scary but my doctors have no problem telling anyone im deff disabled but im extremely depressed bc in the last yr ive had to sell everything my car my furniture the docs took my lisence lost my house im now in a small trailer ... so at this point ive have thrown tha towel just cant do this anymore an the more u think about having psa the more u may break out so be vary carefull dont stress i ended up in the hospital bc of stress so just pls be carefull i really had no choice but to throw the towel bc they took my independance away i feel like a five yr old again so just dont hit rock bottom like me i will keep u in my prayers :)
Hi,I was diagnosed about 3 years ago. I had a lot of the same questions as you now have. When I first joined this group someone here told me I had to learn how to do things differently. At first I was clueless. But I learned they were so right. Instead of carrying all the groceries from my car, I now only take one or two bags at a time. I never lift anything to heavy I wait till one of my teenagers are around to help me. I keep a cane in my car for those time when I start to hurt so I do not over do it. It was learning that delicate balance where to draw the line that I had to learn.
Working part time is not giving in or failure. It is learning to take care of your self & listening to your body. It is learning to control the PsA & not allowing it to control you.
I wish you all the best & if there is ever anything I can do feel free to drop me a message. I am sending you a great big (HUG).
Jessica, I wish there was a way I could help you out! I'm sure you've been up and down every avenue...but, look into some type of home based work. Make sure it's ligit. Maybe your local career center can help. Or a temp service. I know it's hard to start but, selling on ebay.
I know they aren't great ideas. I wish I had better ones for you.
Hi Kristan! I am also a nurse. You stated that in the past tense, and I know that you know, once a nurse, always a nurse! I haven’t worked in a hospital setting in a while out of choice. Unfortunatly we as nurses do not allow ourselves to be ill. Nor do our employers want us to be, ESP if it is chronic. You need to think outside of the box, there are a lot of things you can use your experiences. Look in the nursing magazines. Consider private duty or hospice care. Legal nursing. Open your mind to the possibilities. Doctor office work. Coding. Some require classes to certify yourself, but we are used to that! It might take a little time, but talk to your nurse friends. I wish you well, don’t look back, look forward!
HI Kristan,
I'm sorry to hear you are meeting such resistance while trying to work. I had to quit work full-time because of PsA, and I did not work at all for years. Three years ago I returned to work. Even working part-time has been difficult at times, but I am trying to stick with it. I feel better about myself when I am working, and being around the young people, I think, helps keep me thinking young, too! But, I do know that working full-time is out of the picture for me. Some days the fatigue and pain are overwhelming.
That said, everyone is different. Your PsA is going to be different from others who have this illness. I believe you will know when you are doing too much and have to back off. As long as you are able to work, shouldn't it be your decision whether to continue? Your employer is accommodating your request for no night shifts--that's a blessing. The flip side of this is if you DON'T feel like you can manage working, then it is time for you to consider making a change. But it should be your decision either way IMHO. Don't let others decide what you can and cannot do. Your body will let you know when you are pushing too hard.
When I first returned to work, I tried five days a week working in the Foundation office a college. Too much up and down, too much lifting and too much time on my feet. I am teaching two days a week now. The college pays by the semester, not by the hour, so it works great for me. There are ways to tackle working if you are physically up to it and want to work--and it sounds like you do. PsA takes so much away from us that we have no control over. I think it's best to do what you feel like you can do without pushing too hard. Once you sit down, it's hard to get up.
As jobird says, once a nurse, always a nurse! It’s in our blood! Anyway, I too chose to work outside of the hospital and it was the best decision I have ever made. I work at a desk doing preop screening for an outpatient surgery center. I left the hospital when I started Humira. I didn’t want to up my odds of catching something nasty when I started Humira. I was in the ER and there is plenty of nasty to go around in there!
The upside to getting out of the hospital includes better hours, better pay, better benefits, less coodies, no heavy lifting, and, in my case, an excellent support team at work. All of the staff where I work left the hospital for the same reasons; politics and policies. They seem determined to have a better work environment and are so much more understanding when I am unable to do something or feel too crappy to get out of bed. If you are sick, everyone wants you to go home! It’s soooo very different from the hospital mantra of dope yourself up, come in, drag through the day, crash on the sofa and repeat.
There are so many jobs in nursing that don’t require all of the physical and emotional stress of hospital nursing. I was so excited to leave that I actually cried when I was offered my current job. I was relieved, but also nervous…I was an ER nurse, so how could I be anything else? Changing gears has really helped me grow as a nurse, and make me much more compassionate. I also have the opportunity to interact with patients who have chronic pain, and it is really neat to help folks who have some of the same issues that I do.
I can’t offer any advise for wanting to throttle your coworkers. It sounds like they need a good throttling. But maybe changing gears would be a good thing. If you get into something less demanding, you’ll have more of you to go around when you get home.
My sister is a nurse (since 1962) and has changed Gears numerous times. She has our gifted disease as well. Stills works full time at 72. More recently she is DON for a group of assisted living/nursing facilities. She is also the hammer for facility with trouble. Needless to say as this 5 foot one very white haired lady with a walker and some fusion (hump and all) goes tottering through a hall she has been confuse as a resident more than once... Which has lead to some intersting "situations"
She started out as a scrub nurse, ICU, Pediatric Nurse Practitioner, Professor, and never dreamed that it would be long term health care that would be her favorite. She figures she has another ten years........ She is another who will never be anything else.
I'm curious as to why your doctors say no nights? What does that have to do with PsA? Personally I've always functioned much better at nights. And most people with arthritis struggle far more in the AM then they do in the PM. Makes no sense to me to keep someone unemployed just because they work night shift.
ToGrumpycat and tntlamb… That’s what I’m talking about! I know change is scary, and you loved what you do. I was in the OR on ortho for 26 years, but we must be kind to ourselves. There is so much else out there. As to Chris, working nights can interfere with your citadian (sp?) rhythms and thus interfere with the immune system. To those who do well on nights, we day people luv you!
ToGrumpycat and tntlamb… That’s what I’m talking about! I know change is scary, and you loved what you do. I was in the OR on ortho for 26 years, but we must be kind to ourselves. There is so much else out there. As to Chris, working nights can interfere with your citadian (sp?) rhythms and thus interfere with the immune system. To those who do well on nights, we day people luv you!
I am a nurse that works night shift. Having been just diagnosed with this on wednesday, i'm wondering how it will affect my work. The doc wants to start me on humira in a couple of weeks. i still can't believe this is my diagnose as I have no skin lessions, just my nails are falling off with swollen fingers and a couple of swollen and painful toes. This must be something else, Right?
Julittle, I ignored my symptoms for nearly 20 years. I have very few skin problems, and a lot of my family members had nail issues, as do I. I had no clue I had PsA, and I’m an ortho nurse! I waited til I could hardly walk before finally going to the Rheummy as recommended. I was shocked also. I now am on methotrexate and humira and doing well. I also had a lot of tenditises of the hands and feet. This is classic. I should have listened to mt ortho doc. Fear of the unknown I guess.
When I was dx'ed in 2008 I had one Psoriasis spot about the size of a dime on my back and that was it. But the arthritis progressed very rapidly. Within 3 months I was completely riddled with arthritis. I even had it in my jaw. I was only able to open my mouth about a half an inch. Now, 5 years and many medicines later my arthritis strangely resolved on it's own. I have been off my latest medicine (Remicade) since November of 2011 and I'm happy to report I'm 100% pain free. Not one sign that ever even had arthritis. Sausage toes are even gone. Even my X-rays and MRI's are completely clear. In the beginning the docs said I likely had permanent damage in my toes, and knees, and feet. However, it's not all good news. After 4 years of no skin issues at all, the Psoriasis has now exploded. It's like I traded PsA for P.
Please excuse the typos, as my fingers aren't working right. Jobird and Chris I guess I'm still in a bit of denial about this whole thing. I went to the dermatologist just wednesday and told him I thought I had a nail fungus in 14 of my 20 nails. Some nails have deep ridges and starting to fall off. I was shocked when he said, "whats up with these fingers? you've got a classic case of PA" I had never heard of this. I do not have any skin lessions but do have itchy skin and eyes. My fingers hurt so bad and I'm awefully tired. After 12 hours of working in a busy ICU, I can hardly walk because of foot pain and I've noticed my arches have fallen. Please forgive me for going on and on as I am a bit overwhelmed. Jobird I guess as nurses, we think of others illness and see ourselves as healers, not patients. Chris, it was in your jaw? Chris I didn't realize it may show up as skin lessions at a later date. I have a lot of reading to do. Thanks for the shout out. I'm thankful to be able to share here as I havn't told anyone except my husband about this and am starting to need to talk about it. This whole mess is just aweful.
I can totally understand where you are coming from. I too am a RN and did home health for 16 years. DO NOT let them push you out if your not ready because I had no choice and being a nurse was not just a job it was who I was. I had pustular psoriasis on my hands really bad and while working caught MRSA that colonized and was pushed out onto disability. Now that I am out I can not get back in so do not let them do that to you unless you are willing to stay home. I am not employable and sometimes feel useless. I also have two children and fill my days with them but I dearly miss working. Wishing you the best!! I stay positive by looking at the things I do have like my kids and being able to be a full time mom to them and my church and God. Thinking of you! Jodi Anne
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! :)