Funny you mentioned roller coaster. I told me husband yesterday that I wanted off the roller coaster ride. Of course he is worried. I have had Psoriatic Arthritis for 10 years. Been thru all the meds. Enbrel helped a lot in the beginning. My body adjust to the meds and stop working. I am now on the trial drug AMG 827. I have had great results so far. Of course I still get the flare ups. And that is what I am going thru now on prednisone.
I want you to know you are not alone. I am right with you. Seek counsel if you need it. Don’t wait. If you want to call me just direct message me and I will give you my number.
This is a hard disease to manage. But talking to friends family etc helps me. I get lonely a lot. I worked 26 years then had to take disability. Very hard decision to make. I wish my husband and kids didn’t have to go thru this with me. They feel helpless.
I want to thank each and every one of you that responded to my post. Just knowing that I'm not alone in this battle helps. Knowing that there are other people that have this disease and have felt or do feel the same way as I do helps as well.
I took a sick day today and stayed home from work. As a teacher, I get 10 sick days per year. I had none left at the end of last year, and I'm almost done with them now. When they end, the school district docks my pay for every day I'm out. Right now, my husband is unemployed, and that means we are all living off of my teacher paycheck.
Staying home today and reading all of your posts have made a big difference. I am feeling emotionally better and have an appointment with my therapist later on this afternoon.
Thank you to all of you. It means a great deal to me.
I went to a conference by the Psoriasis Foundation where they said that chronic illness patients should have a psychiatrist on board to help them deal with depression. I made my first appointment and he was glad I had decided to go. It is very depressing to deal with chronic pain and the emotions of this disease. Now he sees me, makes sure that my antidepressive med dose is correct, calls my refills in, and out I go. Last appointment took less than 5 minutes.
There are no words I can say to you that will make you feel better, but that I know what you are going through. This group is my therapy session, but the meds also help me cope. Been there. My Rheumy upped my Cymbalta dose every time he would see me crying non-stop. It helped. Surrounding myself of family/friends helped me on those days I felt at the end of my rope.
About the kids, I used to tell them I had a "boo-boo". They asked if it hurt, and I would tell them that yes, it hurt.
Praying for you. I may not know you, but loving you from a distance.
email me at ■■■■■■■■■■■■■■■■ to give you my phone number. I sleep in the mornings, and I am up all night (pain is worse). Call me at night when you cannot sleep and you'll have a pair of ears that can understand what you're going through.
lbeth - I notice you are in California. I am also a credentialed teacher in CA. I have been out of the classroom since my first child was born in 2002 but 4 years ago I started working in a different capacity as an educator. I am going to figure out how to send a private message on here and tell you about it. I know now that if I had to be in the classroom all day, 5 days a week, I wouldn't be successful. I hurt too much. I can't even imagine having to set up and break down your orchestra space 2x a day. I am so sorry. I feel so blessed to have the job I have now. I can help support my family, use my education/training and I am not on my feet in a classroom full time.
I am glad you are able to get in to the therapist today. I hope the appointment goes well and you find some comfort.
Very well put Daniel. I would only add that perhaps you should see your doctor again soon Ibeth regarding your anti-depression medication. I don't know when your Cymbalta medication was doubled, but I believe Cymbalta (as can many other anti-depressants) can sometimes cause worsening symptoms of depression. It may not be affecting you negatively, as I know you are in a lot of pain (physical and emotional), but it's likely worth a check in with your doctor. :)
Take care and please go to the hospital if you need to, your family will be happy you did. :)
Send a friend request first... You can send a PM with the request but suggest you do the friend thing first. It works better
OrganicKetchup said:
........ I am going to figure out how to send a private message on here and tell you about it. I know now that if I had to be in the classroom all day, 5 days a week,.........
Send a friend request first... You can send a PM with the request but suggest you do the friend thing first. It works better
OrganicKetchup said:
........ I am going to figure out how to send a private message on here and tell you about it. I know now that if I had to be in the classroom all day, 5 days a week,.........
I feel for you and I understand your struggle as I am working through my own struggle. I am not sure if this will help but I can tell you that I have had to take a long hard look at my life and work out what is important and what is not.
I know I can't continue with my life the way it is right now as that is still part of the old me and the way I use to be. I am no longer able to do things or cope the way I use to. Realistically my life as I knew it is unlikely to ever return and I had to let go to stop that internal struggle by accepting my life with PsA.
Coming to terms with how it is now, did not happen easily for me and it took me some time to work through this. I have now made some decisions to make some drastic changes to my life and where I live. It come down to living the best possible life with PsA being part of it. This has meant that my decisions had to be based on health reasons which meant that I have to work with the finances and assets that I have now. Logic forced me to look at other options which previously I ruled out because I did not want my previous life to change even though it already had.
Talking to a therapist can help you work through your issues as sometimes we get too bogged down and get stuck because we don't like what has changed leaving us not knowing which direction to take. A good Therapist will challenge your thinking, help you work out what options you have then you can make the best decision you can and move on from there.
These are just my thoughts and I hope something I have said helps you in some small way.
WE ALL WILL BE PRAYING FOR ONE ANOTHER. DON'T GIVE UP. I TOOK EMBREL ABOUT SIX MO. HELP WITH MY SKIN, BUT NOT MY PAIN. STOP TAKING IT NOW. I WAS DEPRESS WHEN I HAD TO QUIT WORKING. I FELT LIKE I WAS USELESS TO MY HUSBAND. I WORK IN THE MEDICAL FIELD FOR 20 YEARS.HELPING OTHERS NOW I DO GOOD TO HELP MYSELF. I TRY TO ALWAYS THANK ABOUT SOMEONE A LOT WORSE OFF THAN ME. SO PLEASE HANG IN THERE WILL PRAY THAT EVERYTHING GETS BETTER FOR YOU. Karen said:
My tears are flowing right now... the lord has guided and lifted me up the entire way. I am struggling on my decision to start taking ENBREL. Does it really help? Hon. Think about your family. They will give u the will to keep going I will keep posting as I am new to this. But I will help in any way I can. Just ask
You story is almost my story. This site has helped me through many a sleepless night. Having a community of over 900 people WHO UNDERSTAND is tremendous. Hang in. Hang on. I will be starting on Enbrel this week and all I can do is have hope. And come here to help keep my sanity. Vent as much as you need. We are all pulling for you.
Well, I took both yesterday and today off of work, and all I did was SLEEP, watch some TV, hang with my family. I'm feeling a lot better. I think I will go back to work tomorrow.
Thank you, everyone, for your kind thoughts and helpful words. The one thing that is sticking with me is that I need to have a new normal. I've been teaching for the past 23 years, and love what I do, but I think it may not be working with my current physical issues. My colleauges are understanding, but I don't think they fully get it. When I tell them how bone tired I am, the response is usually "we are ALL tired". I don't want to argue with them...but seriously, there is a BIG difference between being tired at the end of a work week and tired all the time from PsA. When I get home from work, usually by 4 pm, I have to take a nap before I can even start dinner. I think it's too much for me right now. The frightening thing is that my husband is currently unemployed, so we need my paycheck. I'm hoping that he will find work soon, but it's been since mid-January.
I will try to check back in tomorrow after work, and let you all know how it goes.
What you said is exactly what I'm trying to do. It makes a lot of sense. In my heart, I know that I can't keep doing what I am doing. It's just too difficult. I've had 23 years of teaching, and maybe I can find something less physically taxing to do that would utilize my education and experience. It makes me sad that my body is preventing me from doing what I love, but maybe there is something else that I could love equally that is less difficult on my joints and body. It is a huge internal struggle for me, too. What makes it even more difficult is having a son in his first year of High School and another in 5th grade at a school he loves. :(
bella said:
I feel for you and I understand your struggle as I am working through my own struggle. I am not sure if this will help but I can tell you that I have had to take a long hard look at my life and work out what is important and what is not.
I know I can't continue with my life the way it is right now as that is still part of the old me and the way I use to be. I am no longer able to do things or cope the way I use to. Realistically my life as I knew it is unlikely to ever return and I had to let go to stop that internal struggle by accepting my life with PsA.
Coming to terms with how it is now, did not happen easily for me and it took me some time to work through this. I have now made some decisions to make some drastic changes to my life and where I live. It come down to living the best possible life with PsA being part of it. This has meant that my decisions had to be based on health reasons which meant that I have to work with the finances and assets that I have now. Logic forced me to look at other options which previously I ruled out because I did not want my previous life to change even though it already had.
Talking to a therapist can help you work through your issues as sometimes we get too bogged down and get stuck because we don't like what has changed leaving us not knowing which direction to take. A good Therapist will challenge your thinking, help you work out what options you have then you can make the best decision you can and move on from there.
These are just my thoughts and I hope something I have said helps you in some small way.
In my job, the School Board had a disability insurance, which I claimed with a dr.'s note. Once you have exhausted your sick leave, this may help.
This income helped me while I got my Social Security checks coming. Once it did, the disability checks were reduced, but there's money still coming in from this insurance until I reach 62 years of age.
Sometimes its so hard to ‘let go’ of the old you, and we all come to terms with it, or not, in our own time and our own way…it doesn’t help when you feel you have the whole burden of the household on your shoulders as well, a lot of us know that only too well.
My boyfriend and I live separately through my choice, as I’m fiercely independent after my marriage split 3 years ago. He never suggested I needed to change my perspective on my limitations, work, household, family pressures but when I finally admitted I wasn’t coping last year and went on sickness leave for 4 months it was the first time I saw him cry…with sheer relief that I was cutting myself some slack. It made me realise that I was the sole person responsible for the enormous pressure I was under, and it was only me who could change it.
I wish you luck and best wishes…you need to cherish yourself as well as those around you, its not your fault you have PsA x
Does your district pay into Social Security? I live in California and they do not here. I have disability insurance, and used it two years ago for an entire school year when I was first diagnosed and in excruciating pain.
Gelita said:
Ibeth,
In my job, the School Board had a disability insurance, which I claimed with a dr.'s note. Once you have exhausted your sick leave, this may help.
This income helped me while I got my Social Security checks coming. Once it did, the disability checks were reduced, but there's money still coming in from this insurance until I reach 62 years of age.
I ended up staying home again today, now feeling incredibly guilty that I'm home and not with my students, that I'm using my very last sick day, that I probably could have gone in today, but emotionally not doing well.
I feel like I'm making excuses for myself not working. When did I become THAT person?
And still having terrible pain, both from a migraine that won't end, and my hips, back, ankles.
Have you talked to your rhumey about changing your meds? Maybe Enbrel is not working enough and something else will?
But do not beat yourself up. If you are not feeling well then you are not feeling well.
I am no longer working as a preschool teacher for I felt I was not able to give the little ones what they need. I do miss them but I also know that I have to take care of myself.
Hang in there!
Rebelmom
Ibeth said:
I ended up staying home again today, now feeling incredibly guilty that I'm home and not with my students, that I'm using my very last sick day, that I probably could have gone in today, but emotionally not doing well.
I feel like I'm making excuses for myself not working. When did I become THAT person?
And still having terrible pain, both from a migraine that won't end, and my hips, back, ankles.