Well, I am new here. I am actually off today cuz I had to call in due to a huge flare. I over did it last week and still paying for it.
I was going through everyone's posts looking for a ray of hope. I am now sitting here crying. This has been a frustrating road for me that started about 20 years ago. I have noticed that the past 12 have just been getting worse and worse. I have had the thoughts about going on disability until I would be able to get a desk job. I am a LPN and almost done with my RN course which will open new doors for me, including getting off floor work. Each day is wracked with pain and fatigue. I was hoping to get on here and see some treatment that hadn't been explored for me. But I am finding that my road resembles a lot of others here.
So I see I just need to do a better job taking care of myself. Need to get my extra weight off. Do my yoga. And take my diet more seriously. I guess I am not going to get my cake and eat it too if I want to have better days. Because there is no magic, cheap pill and this isn't getting better.
I always wanted to start running again. Not going to happen. Wow. Having a moment here. Need to face some reality. Time to take the bull by the horns instead of letting it knock me on my arse. But do it in the way it doesn't set me back.
There. I am done. But feels good to send it to people who aren't going to think I'm just a whiner and making this all up.
I am not sure I am the best person to respond to you but I feel the pull to do so. I am an RN and had a desk job. I went to part time and now am on disability. I found a desk job was hard as I would get extremely stiff and sore and needed a change of position more often than the job allowed. I also was batteling extreme fatigue which my co-workers did not understand. When I found myself wanting to shout at my patients, "you are complaining about that, I'll show you what real suffering is....."!!!! I realized it was time to leave. But please remember each of us,even with the same diagnosis are different. What works for me may not work for you and vise versa. I am on Embrel, methotrexate, celebrex for PsA. I still have flares though less often and of less intensity. I have found that now my youngest is leaving for college and I am not working it is time for me to take care of myself though as a mother and a nurse I am not even sure what that means. I have been getting more rest, trying to eat well, doing an arthrits pool program and massage. I am glad you have joined this group. Although I am also new to it I believe it will be a great resource for both of us. I truly hope you find some relief.
Welome to the group, I have only been diagnosed April 2011 and still have to come to terms with this condition and I have to aacept I cannot do what I used to and my life will never be the same. In a good space at the moment, with pain and all but decided to look after ME coz nobody else is going to do it. I had a desk job but the stress was killing me and making my pain worse. On temporary disability at the moment and never been happier in my life as I now have the time to manage this condition. Being able to chat to others has been a huge source of inspiration and uplifting on those really bad days. Wishing you all the best on the way forward, hope you find some relief from your current flare-up
Thank you for your response. I think I had unrealistic expectations for myself and have to say my general practitioner has been trying to bring me out of the clouds about how much I can really do. But I was trying to be optimistic and had the "not me" mentality. And I plan to keep part of that outlook because I don't ever want to give up. I have lots of plans. But I do need to take things more seriously, including my health and being accountable about my weight, diet and exercise.
Coming to terms with being limited sucks. And being a nurse I have had to watch people everyday deal with this and I know from watching them, it is a day to day issue. And just my short time here, it is helping. I am more determined to take care of myself.
JoJo said:
Welome to the group, I have only been diagnosed April 2011 and still have to come to terms with this condition and I have to aacept I cannot do what I used to and my life will never be the same. In a good space at the moment, with pain and all but decided to look after ME coz nobody else is going to do it. I had a desk job but the stress was killing me and making my pain worse. On temporary disability at the moment and never been happier in my life as I now have the time to manage this condition. Being able to chat to others has been a huge source of inspiration and uplifting on those really bad days. Wishing you all the best on the way forward, hope you find some relief from your current flare-up
I know exactly what you mean. I seem to spend a great deal of time in the "not me" place also. I feel sometimes like Alice in Wonderland. Half the time people do not see my invisible foe and tell me to just get rid of the cane, adopt a happy face and all will be well and other times I am dealing with people who want me to not do anything and run around me saying, "dont' do that, give me that....". And every day is a new set of challenges and joys. I may no longer be able to dance but I am now a mental ballarina! Though I try to keep some dreams I find if I fight my foe it is worse than making this for my friend. If I let it have it's way most of the time I have the strength to do the things I really want to do or can't do without. Like throwing a party for my son or taking him to college but I don't have to paint a room or weed a garden. I am not sure this makes sense but I feel better for saying it! I hope you find relief.
Oh, I'll get there. Or I'll have a good day again. Need to start yoga, need to lose weight. those two things will go a long way. I'm hoping :)
michael in vermont said:
I know exactly what you mean. I seem to spend a great deal of time in the "not me" place also. I feel sometimes like Alice in Wonderland. Half the time people do not see my invisible foe and tell me to just get rid of the cane, adopt a happy face and all will be well and other times I am dealing with people who want me to not do anything and run around me saying, "dont' do that, give me that....". And every day is a new set of challenges and joys. I may no longer be able to dance but I am now a mental ballarina! Though I try to keep some dreams I find if I fight my foe it is worse than making this for my friend. If I let it have it's way most of the time I have the strength to do the things I really want to do or can't do without. Like throwing a party for my son or taking him to college but I don't have to paint a room or weed a garden. I am not sure this makes sense but I feel better for saying it! I hope you find relief.
I do think being of a moderate rather than a heavy weight does help joints especially lower body joints. But personally although I do my exercises even when I am doing poorly I did not see weight reduction until my PsA was adequately treated. I feel that whn it is well controled I am more active and not "just doing" pool and massage therapy but more active throughout the day. And probably eating b etter, less comfort food!
I just wish I could suppress my stupid cravings! That is definitely my down fall. I love love love cheese and salt. And i'm not talking little cheese sticks. I am talking ooy gooy warmed up cheese. I really believe it's an addiction. but don't know how to kick it when you gotta eat. i'll get there. need to find the key. it'll happen.
michael in vermont said:
I do think being of a moderate rather than a heavy weight does help joints especially lower body joints. But personally although I do my exercises even when I am doing poorly I did not see weight reduction until my PsA was adequately treated. I feel that whn it is well controled I am more active and not "just doing" pool and massage therapy but more active throughout the day. And probably eating b etter, less comfort food!
No, of course you aren't making it up. Who on Earth could ever imagine such pain in their wildest dreams? I never would have thought it was possible!
Bu you're right, not overdoing it is crucial to not kicking off unnecessary flares (not that any are necessary!) Also, plenty of rest. I know that when I don't get these, I pay. And pay and pay. And also light exercise is helpful.
I wish you the very best and hope the new and upcoming job will give you more comfort level and ability to balance your life with this illness.
Thank you. I appreciate it. I don't know where to go with all this. Have to take baby steps. Losing weight is my major hurdle at this point. And this bootie doesn't go over hurdles very easy! :)
Petunia Girl said:
No, of course you aren't making it up. Who on Earth could ever imagine such pain in their wildest dreams? I never would have thought it was possible!
Bu you're right, not overdoing it is crucial to not kicking off unnecessary flares (not that any are necessary!) Also, plenty of rest. I know that when I don't get these, I pay. And pay and pay. And also light exercise is helpful.
I wish you the very best and hope the new and upcoming job will give you more comfort level and ability to balance your life with this illness.
Yep, reading all your posts and going me too me too! Not funny, but hell I used to be an RN too, then worked in disability for many years. Not working now, and have finally accepted that I won't again (after a lot of denial) I DO plan on doing some volunteer work at some point but for now I'm mostly focusing on myself.
On the plus side, have finally managed to read all those books, watch all those movies............
oh, and I thought I previously understood what pain was hahahahaha........
oh, and I was n't going to be like everyone else and take all the drugs..
nor was I going to continually troll the internet looking for miracles..
wow. this has been such a hard pill to swallow. and i've tried many time. haven't quite done it yet. i want to be the exception. but then i look at myself sitting here holding down this bed today. my feet hurt so bad that i dont want them to touch the mattress. my fingers and toes hurt so bad typing and walking hurts so hold my bladder as long as i can so i dont have to walk and ignore texts from family. i am supposed to take my tweenager to a fast pitch game tomorrow 60 miles away and am dreading it. such little things in life have become huge ordeals. to think i have come to point of planning out my potty break to make the most of it pains me.
xmasmumma said:
Yep, reading all your posts and going me too me too! Not funny, but hell I used to be an RN too, then worked in disability for many years. Not working now, and have finally accepted that I won't again (after a lot of denial) I DO plan on doing some volunteer work at some point but for now I'm mostly focusing on myself.
On the plus side, have finally managed to read all those books, watch all those movies............
oh, and I thought I previously understood what pain was hahahahaha........
oh, and I was n't going to be like everyone else and take all the drugs..
nor was I going to continually troll the internet looking for miracles..
I had to leave work early today. I spent all day yesterday on my couch sobbing. I had to contact my doctor today who had to give me Percocet. I'm on Humira, Mobic, Prednisone and Tramadol. Currently awaiting insurance approval on Remicade. I have not been diagnosed for very long, it will be a year next month. I have not come to terms with this disease yet. I still break down. I still think it's unfair. But I take it one day at a time. Luckily my job understands but they know I try my hardest to be there and do my job. But my job isn't the most important thing to me. I need to learn that taking care of myself is most important. I hope you get to feeling better and have better days ahead.
wow. when you think you have it bad, someone has it worse. I am so sorry for your pain. I completely understand and pray for your strength and relief. Stay strong.
Leahdc said:
I had to leave work early today. I spent all day yesterday on my couch sobbing. I had to contact my doctor today who had to give me Percocet. I'm on Humira, Mobic, Prednisone and Tramadol. Currently awaiting insurance approval on Remicade. I have not been diagnosed for very long, it will be a year next month. I have not come to terms with this disease yet. I still break down. I still think it's unfair. But I take it one day at a time. Luckily my job understands but they know I try my hardest to be there and do my job. But my job isn't the most important thing to me. I need to learn that taking care of myself is most important. I hope you get to feeling better and have better days ahead.
Reading all these comments has brought me great comfort knowing that its not just me, that its not all in my head, that Im not a hypochondriac. This is how I felt many days, that my co-workers thought it was all an act> I will still asked to do extra tasks even though I was about to fall over from the fatigue, REALLY what part did they not understand. It still makes me angry when I think about it. Anyway, feeling a lot better now!!
So sorry you are having such a tough go of this, I know your work is hard and long with no time off the concrete floors. May I please ask why you have not been put on a biologic like Enbrel after 4 years since your diagnosis? I felt a difference almost right away with Enbrel, it's not magic, but I have had some good days, my DC saw a noticable difference in me too.
Unexplored treatments might include a DC, massage therapist, acupuncturist?
I can only assume you are seeing a Rheumatologist, hope so!
I looked over your profile, and had to ask these, hope you don't mind.
can't afford massage, chiro, acupuncture, etc. the copay is crazy. i have 4 kids. school...life is expensive. im scared of the biologics. i can't even make it paycheck to paycheck. money is a big factor. maybe why i fight so hard to keep a job and not go on disability.
SK said:
Dear pippy,
So sorry you are having such a tough go of this, I know your work is hard and long with no time off the concrete floors. May I please ask why you have not been put on a biologic like Enbrel after 4 years since your diagnosis? I felt a difference almost right away with Enbrel, it's not magic, but I have had some good days, my DC saw a noticable difference in me too.
Unexplored treatments might include a DC, massage therapist, acupuncturist?
I can only assume you are seeing a Rheumatologist, hope so!
I looked over your profile, and had to ask these, hope you don't mind.
Is there a particular reason you are scared of the biologics, pippy? Its got to be pretty significant to give up your life and dramatically effect your time with children.
Don't let hype from the folks selling "natural remedies" peppering the internet scare you. There are professional firms who do nothing but "salt" sites.
Fact: Of the three classes of drugs used to treat PsA the worst side effects long term come from NSAIDs followed by DMRDs and then the Biologics. The worst long term effects and most certain effects come from no treatment.
Fact: There is no higher incidences of Cancer with the Biologics than the general population in broader studies
Fact: The incidence of serious infection with Biologics (those requiring hospitalization) are NO HIGHER than the general population.
Fact: Disability income (SSDI) for most, is lower than poverty level but not low enough to qualify for medicaid so your medical expense for the first 2 years is out of pocket UNLESS you can devote as much as 50% of your diusability payment for porivate medical insurance.
Fact: Well over 90% of patients seeking treatment get dramatic improvement, and can live a "normal" life (with adjustments)
Fact: Dealing with this disease is a B***, but it can be done. We are all in it together
I understand what you are saying. How the heck did I go from being a competitive karate student to asking about a cane???? It takes a while to grasp what you are up against, and I am still working at it, but I think we will all find something that works if we keep positive and keep moving. No, running is probably not smart, but swimming is excellent.
Have you tried the drugs like Enbrel? I have to say that has improved my fatigue incredibly. I still have spine pain but it is better and not having the fatigue has been a miracle!