The first year was horrible for me. I was incapacitated by fatigue often. I was able to telework often and I had a lot of leave saved. I have an office with a door and I brought a pillow to work and would take breaks on the floor! It was the only way I could get through the day.
Again, I have to say how much simplifying the home life helped my work life. I’ve listed some examples for you:
-De-clutter your house: clothes, shoes, junk, trinkets, etc… The less you have to pick up, the more rest you get. Also, less to try to work around all the time
-Do a little at a time: always pick up things. If you are constantly and consistently keeping up on small things, they’re never too big to handle
-De-bulk your kitchen: replace all of our heavy items in the kitchen with lighter versions. Switched out the heavy pottery-type dishes for cute Correlle, got rid of glass mixing bowls for melamine, found lighter pots and pans. Really pruned our cabinets, so there is less of the stuff that we don’t really use
-I keep little baskets around for storage or carrying multiple items around. Got a step basket to keep that pile of junk on the stairs under control.
-Removed the carpet everywhere for hardwood. Now I can clean the floors without killing myself. I have great lightweight sweepers and mops that are all in one units. No bending, lifting, or lugging involved.
It took some time to do all of that, but I’m much less exhausted than I used to be because of that. My rule is that if it doesn’t have a place, it’s got to go.
I agree with everything Grumpcat posted - she's a wise woman :-) I also have learned not to worry about things like I use to - I don't worry if I'm tired and the house isn't perfectly clean. I've learned to ask myself "is this really important" often the answer is no. If I'm invited to a friend's house, I may pick up something at the store instead of making something - she doesn't care. She just wants to see me. I've really changed my outlook.
You guys are so awesome! This is so frustrating and embarrassing to me.....the fact that I can't do what I want, when I want and have to ask for help...never been very good at that. I cannot tell you how much I appreciate all the great advice and support! I see my new Rheum on Monday....we'll see what he can do :)
Sunshine,
Many of us have trouble asking for help. There was a discussion about it - you can search for it. But, we need to learn to ask for help and know it's ok.
:) Thx
Frances said:
Sunshine,
Many of us have trouble asking for help. There was a discussion about it - you can search for it. But, we need to learn to ask for help and know it's ok.
Well, I was working almost 5-6 nights a week on overnights. I was cleaning and taking care of residents and lifting people in wheelchairs. I HAD to get a new job. So I found one doing the same thing but, this group home only has one in a wheelchair and he can lift himself pretty well!! We have a mechanical lift that also gets him out of bed. I do have to roll him on his side but, I have built up enough muscles to support my joints that I am capable of it. I really like having a physical job because I feel the more I move the more I will preserve my body. That may not be true but, I just worry if I sit down at a desk all day I will get tight in my joints and tendons. I don't want that to happen to me at the young age of 31. I also was able to get on Enbrel finally! My new job had a set schedule of 4 overnights one week with 2 days off between and 3 overnights the next week. I was able to rest a lot on my days off. BUT I now have been here 6 months and two people have quit and I am working more than I wanted. I was supposed to have a set schedule. For the past couple months I am barely making it through my shifts. I have a gel that I can apply to my hands and it's called Voltaren. It's an NSAID. I cannot take pills with NSAIDS because the doctors that treated me before I was diagnosed with PSA shoved them down my throat for years and it caused major stomach issues. The gel is really helping me though. I also take a lot of breaks at work. When I get home I take Flexeril before I sleep so my tendons and joints don't tighten up on me. Also, I did talk to my boss and explained how important it is to me to have that set schedule and how bad my hands are getting. She is moving me to 2nd shift in March. I just have to get through the next few weeks. At home sometimes it helps to lay on a heating pad and to apply some Bengay. These of course do not stop the inflammation so it's important to get on a drug that will help that. I went for Enbrel because the pain became unbearable. Also, it has been around the longest of all the biologics and I prefer a biologic over a DMARD. (although I am hearing that MTX can stop us from developing antibodies... wish my derm told me that.) Biologics target specific tnf inhibitors that cause our inflammation. DMARDS are systemic and affect the whole body. Good Luck to you!! I hope you find the right way to handle things. Really, I am risking having serious joint damage by sticking it out at my job for the next few weeks but, I cannot take a vacation and I cannot afford a leave of absence. So by no means do I think you should risk it either. Only you can answer this question and decide what is best for you.
This is all really great information!! :-) I invested in a swiffer mop at home and I love it! So easy to maintain. I also use lysol wipes in my bathroom to keep germs away and that way I am not having to go in and scrub so much since I keep it up every couple of days. I do have to say the bath tub is a trick?! How do I not get on my knees to clean the tub??? I have resorted to doing some kind of weird looking yoga pose when I attempt to clean my tub and I don't think this is good for me hahah! I also invested in air purifiers for my living room and my bedroom, seems to really help!! I try my best to do a load of laundry daily or every other day so I am not overdoing it in one day. My dishes, well that's been a work in progress. First I kept a little dish with soapy water and a sponge hoping we would wash them as we used them. NOPE didn't work. So now I just use a roll away dishwasher and try my best to keep up on the dishes as they start to pile up.
GrumpyCat said:
Again, I have to say how much simplifying the home life helped my work life. I've listed some examples for you:
-De-clutter your house: clothes, shoes, junk, trinkets, etc.. The less you have to pick up, the more rest you get. Also, less to try to work around all the time
-Do a little at a time: always pick up things. If you are constantly and consistently keeping up on small things, they're never too big to handle
-De-bulk your kitchen: replace all of our heavy items in the kitchen with lighter versions. Switched out the heavy pottery-type dishes for cute Correlle, got rid of glass mixing bowls for melamine, found lighter pots and pans. Really pruned our cabinets, so there is less of the stuff that we don't really use
-I keep little baskets around for storage or carrying multiple items around. Got a step basket to keep that pile of junk on the stairs under control.
-Removed the carpet everywhere for hardwood. Now I can clean the floors without killing myself. I have great lightweight sweepers and mops that are all in one units. No bending, lifting, or lugging involved.
It took some time to do all of that, but I'm much less exhausted than I used to be because of that. My rule is that if it doesn't have a place, it's got to go.
I agree, in the past few months I really do have more energy and I have been working towards the Anti Inflammatory diet. I did cut out a lot of processed foods and bleached flour. I eat whole grains, lots of fruit and veggies, lean meats and small portions of meat, and I feel really good!! :-) I have been working overnights since august of 2012 and I was exhausted literally every day for a year. I started eating healthy and getting more sleep and drinking lots of water! By no means is that a cure, I still have flare ups and my PSA sucks!! But I really do think it does help me cope more and I really enjoy feeling like a new me. I also added a probiotic to my diet but, I did that because of bowel issues.. and it cleared that up in 2 weeks!
Anna said:
This should get better once you get on a drug that's helping you! Have you seen a rheumatologist? Are you taking an NSAID? MTX? Biological? A good stop gap drug is Prednisone, but save that for when you really can't stand it. It's not a drug that should be taken routinely.
I have had this disease for 33 years. After I was diagnosed it was rough going. But it really is like several people already stated... It's like that in the beginning. I worked as an ICU nurse for much of the time with this diagnosis.
If I may suggest one thing to you that helped me with fatigue.
A couple of years ago, after I retired, I researched diet for quite a while. I was hoping for something that would help my flaring arthritis. Psoriasis had been suppressed for many years, so that's not an issue. I found Dr Fuhrman's nutritarian diet, and it appealed to me. It's largely anti inflammatory, meaning you cut out processed food, flour, sugar, and emphasize fresh fruit, veggies, and legumes. There's more to it, but that's it in a nutshell. It didn't do a darn thing for my arthritis, but there was a very noticeable jump in my energy. Give it a try! Drfuhrman.com
Best of health to you!
Anna, I need a BIG jump in energy! I'm going to try the Fuhrman diet. Thanks for posting the info. Did you buy one of his books? If so, which one was helpful?
thanks,
Frances
Well, another day I called into work sick. Since my flare up last week , it has been a rough sore fatigued few days. The weather here in Cleveland is horrible with snow & cold weather. The kids have another snow day.
I have had 4 days off work using vacation time, two days were the weekend so they don't count.
The fatigue is so bad, I had a Humaria injection Monday and the inflammation is much better. I keep telling myself that since I am leaving my job in three months anyway to relocate to AZ, that I should not worry about what work thinks at this point. That is what my Humaria advocate tells me at-least. I had a talk with her yesterday.
My advocate told me that when the time comes she will help me with the disability forms if needed and that with the severity of my PsA that is will probably happen. I just cant believe this still, maybe cause it has only been 6 months since my diagnosis. I don't know?
I feel that when we move to AZ in 3 months that life with PsA will get better, maybe find a job working part time first. I am not a person that can stay put. I like to stay busy and active, this is a hard pill to swallow for me still. I was a very active person, I used to race Motocross (dirt-bikes) I am use to physically demanding activity. I was hoping to race again in the senior class since my daughter started racing the kids class last Summer, looks like I had better never get on a dirt bike again now.
This may sound crazy, each morning this week when I text my supervisor that I will not be in again, I get worried looking at the reply & I look at it after I wake back up. why should I feel guilty or woried what work thinks? They are not the ones with disfigured fingers, fatigue ,stiff legs & knees.
Thanks, I had to get this out. Back to bed for me.
My hands are in a flare. I was supposed to buff the floors at work twice a week and I skipped it…sometimes you have to pit yourself first and hope they understand. Take your rest and get well soon. 
Unless your Humira advocate is a specialist in PsA, has met you face to face, and meets a whole laundry list of other qualifications, I would take that with a grain of salt. I took 12 weeks off of work last year, plus another 4 and I was in pretty bad shape myself. My treatment improved, my PsA got a little better, and I decided that I would continue to work, live, and thrive. Don't give up based on how you feel today. It does improve when the right treatment is used.
CHARGER73 said:
Well, another day I called into work sick. Since my flare up last week , it has been a rough sore fatigued few days. The weather here in Cleveland is horrible with snow & cold weather. The kids have another snow day.
I have had 4 days off work using vacation time, two days were the weekend so they don't count.
The fatigue is so bad, I had a Humaria injection Monday and the inflammation is much better. I keep telling myself that since I am leaving my job in three months anyway to relocate to AZ, that I should not worry about what work thinks at this point. That is what my Humaria advocate tells me at-least. I had a talk with her yesterday.
My advocate told me that when the time comes she will help me with the disability forms if needed and that with the severity of my PsA that is will probably happen. I just cant believe this still, maybe cause it has only been 6 months since my diagnosis. I don't know?
I feel that when we move to AZ in 3 months that life with PsA will get better, maybe find a job working part time first. I am not a person that can stay put. I like to stay busy and active, this is a hard pill to swallow for me still. I was a very active person, I used to race Motocross (dirt-bikes) I am use to physically demanding activity. I was hoping to race again in the senior class since my daughter started racing the kids class last Summer, looks like I had better never get on a dirt bike again now.
This may sound crazy, each morning this week when I text my supervisor that I will not be in again, I get worried looking at the reply & I look at it after I wake back up. why should I feel guilty or woried what work thinks? They are not the ones with disfigured fingers, fatigue ,stiff legs & knees.
Thanks, I had to get this out. Back to bed for me.
Oh yeah, my Humaria Advocate calls me weekly, comes to my house about twice a month to check on me & is one of my biggest supporters. She is awesome. She has over 20 years experience with RA/PsA.
Wow I never heard of advocates! I want one :-) I am on Enbrel!
Again, the Humira advocate is just that. They are indeed there to support you and that is a great thing. But let me tell you this: This is your first medication and you have not been on it long enough to feel the full effects of what it can do. The first year with PsA is usually the hardest, and there are a lot of people on this very page who felt that they would be on disability when they were first diagnosed and in that first year or so period. However, most, if not all, of them are still working and in completely different places than they were a year ago. Also, the road to disability is not a short one. It takes years to be approved and that is only after trying and failing numerous drugs, physical therapy, AND going to job counseling with a person who determines that there is no job that you could possibly do. No one should be telling you what the future holds this early on.
Many of us on this page are still not where we used to be physically. I am one. I wake up every day in pain and go to bed the same way. My average pain is 5/10 after I take my meds in the morning. I am on my second drug and I am only in my second year with PsA.. However, I work at least 60 hours a week in a very demanding job.
There is a choice that each of us make early on: are we going to fight or are we going to give up? We usually face that after we accept this disease, and realize that we can make it though and that things may be different, but we are going to be okay. There are people who genuinely need disability, and for them I am sorry that the process is so very hard to get through. But most people with PsA are very capable of living normal lives and continuing with our careers.
I'll let TNTLamb fill in the rest.
I agree Grumpycat. A year ago I didn't know how I was going to continue to work and was looking at my financial options if I couldn't. I was extremely concerned. Now, I feel confident I will retire when I want to !
Right, well all I can do now is follow the advice of the professionals that are prescribing my medication and treating me. I will work and do as much as long as I can. I saw my specialist today & maybe I am not doing so well. It is better to be prepared and listen to what is going on. I have a wife & 2 young children to support.
If that is what my path leads me to then I will cross that bridge when I get to it.
I was diagnosed just recently. However I have been living with this for a long time & much damage has been done to my joints already.
"There are people who genuinely need disability, and for them I am sorry that the process is so very hard to get through." I may be one of these people.
"It takes years to be approved and that is only after trying and failing numerous drugs, physical therapy, AND going to job counseling with a person who determines that there is no job that you could possibly do. No one should be telling you what the future holds this early on."
So my physician & Advocte that I trust are feeding me bad info?
They want me to start remicade & physical therapy. However, since I am moving in 3 months my doctor said to wait until I move to start all this if the climate a newly approved meds in AZ do not help.
My husband often tries to explain this to me and I have tried my best to keep an optimistic attitude. I keep on keeping on every day. Some days I really do want to just quit my job but, I personally can't afford it and I do think that keeping our bodies in motion helps a lot more than laying in bed all day (Even though I have been guilty of this on my days off). This is really my first year on Enbrel too so I can definitely relate to this situation. I do take a lot of breaks at work and try not to over do it. I was doing restorative yoga to help with flexibility and I was lifting weights at the gym to help my muscles support my joints. It is something I need to get back into doing. I just need to find my motivation... I seem to have lost all motivation in working out.
You do not want an Advocate Amiga. Their job is to help with paperwork. They have little to no training and certainly NONE that applies to patient needs and disability. I'm reasonably certain there is some misunderstanding, I don't know of any patient advocate that would predict disability for PsA or one who should. There arr folks who spent 12 or more years in college to be able to make that call
To begin with fewer that 10% of PsA patients once starting treatment and jumping through the treatment hoops(there are rule about this sort of thing docs just don't make referrals) ever get a physician referal. Of those fewer than 10% get disability. I have seen hundreds of cases. I have never not once seen anyone approved with just PsA. There are always other co-morbitities and conditions. The only exception are workers over 55 years old.
In the event you DO get disability be aware that the average award is about 875.00./month. This is an amazing number in that you will not qualify for Obama Care (too little income) and will not qualify for medicaid (too much income) You will not qualify for foodstamps, ssi, or any other aid unless you live alone as those programs are needs based and based on total family income. You will have not medicare until you have been disabled for two years. All medical expenses/insurance will be your responsiblity as will part B medicare after 2 years. So instead of living on 875.00 dollars (average) you will be living on 675.00.
I understand fingers. I was highly paid "mechanic" who fended up as a "math teacher" not quite my plans. Understand if show up to the Social security Office in my town the person taking your application will be a quad who is on a respirator a feeding tube, poop bag and catheter bag and types out your answers with a soda straw in her teeth. It's rather humbling.
I don't know anyone situation so this isn't directed toward anyone, but these are the facts. Easy disability approval and an easier life at home living on disability exists only on Fox News.
That period after diagnoses is scary as hell. It takes some time to adapt. It may well be that someone needs some time to put together their new life and get respond to treatment. They may have work to with voc-rehab to learn new skills. They may have to work a job when they don't want to in the hopes they get fired (a pretty good option BTW) so they can collect unemployment. while they get things under control.
I understand differences. I was first offered Biologicals before the real cancer risk was known and broken down in after market studies (there is none unless you are a teen boy with chrons) The form of cancer during the phase III was only about 50% fatal and took about 10 years at that.I misunderstood and thought just about EVERBODY got the cancer after 10 years and half survived. I figured it was a worthwhile chance.
You have a different life after being diagnosed, but you still have a life. Listen to Grumpy. she was one who was thinking disability, she really was. Today she has a different job (in her field) its a better job and she hasn't been trown up on by a drunk in a very long time (she was an ER nurse)
The disability process should not be as difficult as it is , but even for those who get through it, remember there isn't much at the end if you do.