I have been at my job less than a year....just moved to SA in July. I am missing a lot of work because of pain, fatigue and doctors appts.....how do you manage it??
I think we all go through periods of this, especially in the beginning. I certainly did. I was off for at least 12 weeks. I used up my vacation and then went out on FMLA leave. Initially, I didn’t really know how to manage my disease, or the impact it was having on my life. I learned how to simplify and change my expectations. We made a lot of changes to make our home lives easier and that allowed me to continue working, which was really important to my emotional and financial well being. I love my work! I also made some small adaptations at work that help me keep up with my peers. There are still days that I don’t want to get up or think I can’t, but if have learned to push through. If you want any more info, just ask and I’ll give you some details.
I am fortunate to have a forgiving boss and the ability to work from home if I need to. In my previous position with the university I had a not-so-understanding boss who made it more difficult for me and I did drag myself in many times when it aggravated my illness. Luckily my Rheumatologist wrote me a note for my boss and as long as I was in the office when she expected me to be there (when she was there) it worked out.
I do NOT know what I would do if I had a "regular" job with fixed hours. I'd be fired for sure. And I think I have my disease quite well-controlled!
I went through this also...struggling to keep working. I fought and dragged myself through each hour, day and week. It was really difficult to say the least. I had a physical job at the time too so working only aggravated things further. Personally, I had to find a new job with less physical expectations. Even after starting the new job i struggled with all the pain and swelling caused by the job I had before. I took a lot of Advil and used a topical pain reliever. I'm not suggesting this is what you should do...but it's how I got through it. I paid the price.
If you can take the time off or get a note from the doc I strongly suggest that.
I am having a very difficult time with work right now. I have a great career at a local college where I live and I have been advancing until now. I have only been diagnosed within the past 7 months and I have already blew through 10 years of earned sick hours & I am lucky that I have vacation time I can use.
The other difficulty is that I am on the tail end of earning my BA degree and I have to keep taking breaks from courses. The University I am earning the degree through is not happy with all my breaks, although they are all medical and documented.
My office supervisor gives me 100% support and wants me to advance, it is just so frustrating.
All I can advise is document each visit and get the FMLA form ready. Keep good communication with your supervisors and HR Dept.
I have Psa, psoriasis, bipolar disorder and fibromyalgia. I just know that every day I must get up (no matter how I feel) and go to work. I don't see it as a choice. If I'm having a "bad" day, a flare up or a mental swing, I recognize that and call the doctor. We work out the issue, which usually results in a medication change and I go on. Don't play with your employment. In most of our cases, that's what keeps you insured so you can see the doctor and get the meds you need. A lot of you may not like my comment, but this is my rationale and it has worked for me.
You do what is best for you. Each person lives a different life & has different responsibility.
It is good to hear different sides to this.
I agree with grumpy cat, at first all seems pretty painful and gloomy. I'm not saying everything works for everyone, but at my age I considered my quality of life versus the biologics down-side and chose to get Remicade. Humira worked well until my insurance changed and those months between H & R showed me my life without it. I can live mostly pain-free now (except for the recent antibiotic reaction (nasty) with Levaquin. It has exacerbated all my PsA symptoms and then some. I will be adapting to that now.
I hope you continue to share your process with all of us. Most people don't understand what they can't see. If we had big gashes across our foreheads we might get a little more help and understanding. In the meantime, be your own best friend and try to find ways to adapt improve your quality of life.
My best.
It is hard trying to work out how to manage your health, career, family, bills, etc, etc when you are unwell.
Try asking for one day less a week at work. Can you work this day from home?
Maybe, look for a different type of employment. Something easier for you. Less stressful, less physical.
If your work provides counseling, use it.
That's a good idea and does work sometimes. I was able to do that because sitting or working too many hours in a row made me hurt more than what was good for me. It took a while to convince my boss and co-workers that it could work out, got a laptop to schlep back and forth, then when I really needed down time (like surgery) I still could do my job with minimal impact on them . That was five years ago. I do accounting so it's not like some jobs where you have to be there in person the whole time. Now I do about half and half office/home office. I set it up so they could easily interface with me by phone and email so I could meet the needs of my job as well as take breaks and take care of myself too. I rearranged some of my priorities and asked my family to help out more. I had to say no to a lot of things I enjoyed. It's definitely a challenge to face isn't it?
rustydog1973 said:
It is hard trying to work out how to manage your health, career, family, bills, etc, etc when you are unwell.
Try asking for one day less a week at work. Can you work this day from home?
Maybe, look for a different type of employment. Something easier for you. Less stressful, less physical.
If your work provides counseling, use it.
I like your comment! I have to do the same thing. One good thing about PsA, is that it has made me learn how much I can actually do!
Sallie said:
I have Psa, psoriasis, bipolar disorder and fibromyalgia. I just know that every day I must get up (no matter how I feel) and go to work. I don’t see it as a choice. If I’m having a “bad” day, a flare up or a mental swing, I recognize that and call the doctor. We work out the issue, which usually results in a medication change and I go on. Don’t play with your employment. In most of our cases, that’s what keeps you insured so you can see the doctor and get the meds you need. A lot of you may not like my comment, but this is my rationale and it has worked for me.
Thanks again for all the great input! I'm learning a lot!! :)
hi sunshine,
I live in SA as well. I have a good rheumatologist that I have been seeing for five years. Let me know if you need her name and number and I will get it to you.
Where did you move from? I have lived just outside of SA, TX for more than 30 years (my adult life)
I am currently on extended FMLA (don’t know if that is the right term) but I have been out of work since August (June if you count the summer that I was off.) I work as a teacher. My time off is coming to an end they tell me. Then I will be on COBRA until I can qualify for an early disability retirement. Even though I have 10 quarters in social security, I have not paid into that system in the last five years, so I don’t think that I am eligible for SSDI.
I am on my sixth medicine in the five years. Some worked for a while and then quit working. I am praying that I will be able to qualify for the disability retirement. My rheumy is sending me to another doctor who only handles disability. I think it is so she can keep an arms length from the process. She said it is because he is an expert in determining the level of disability and in filling out the paperwork. I am scared of the process and scared of being turned down. What I do know is that I can no longer work.
Hi! I'm sorry you've been having such a hard time...
My husband and I just moved here this past July from College Station. One of our sons and his family live in Converse and one of Robs brothers lives in New Braunfels.
I just made an appt with a Dr. James Wyld....in with Dr. J. Ayala for Monday. Have you heard of them?
Hi!
I replied to your comment earlier.....or at least I thought I did....until I realized I replied to myself! LOL....that is how my week seems to be going!
I'm sorry you have had such a hard time with PsA.....I get being on your feet & using your hands all day.....worked in the medical field for over 20 yrs.....
Thanks for letting me know you have a good Rheum....I'm scheduled to see a Dr. James Wyld on Monday....he's in with Dr. Jane Ayala....have you heard of them?
Hope you have an easier week.......nice to hear from you!
Mlearning said:
hi sunshine,
I live in SA as well. I have a good rheumatologist that I have been seeing for five years. Let me know if you need her name and number and I will get it to you.
Where did you move from? I have lived just outside of SA, TX for more than 30 years (my adult life)
I am currently on extended FMLA (don't know if that is the right term) but I have been out of work since August (June if you count the summer that I was off.) I work as a teacher. My time off is coming to an end they tell me. Then I will be on COBRA until I can qualify for an early disability retirement. Even though I have 10 quarters in social security, I have not paid into that system in the last five years, so I don't think that I am eligible for SSDI.
I am on my sixth medicine in the five years. Some worked for a while and then quit working. I am praying that I will be able to qualify for the disability retirement. My rheumy is sending me to another doctor who only handles disability. I think it is so she can keep an arms length from the process. She said it is because he is an expert in determining the level of disability and in filling out the paperwork. I am scared of the process and scared of being turned down. What I do know is that I can no longer work.
I have heard of Dr. Wyld and he is a good doctor. The principal at my school told me about him as her mother and sister both have rheumatoid arthritis. My doctor is Emily Pineda. I have been happy with my treatment up to this point, but she is the only PsA doctor that I have ever seen.
I know College Station well. Both my children graduated from TAMU recently and they are both still living there.
I had my fourth Oriencia infusion today and for some reason it was more difficult than the three “loading doses” that I previously had. I had a horrible headache and nausea. After several hours sleep, I am awake but still not feeling well. Oh well, tomorrow is another day.
Keep in touch and let me know how your appointment with the doctor goes.
Hi, I’ve found that a good and open relationship with my manager has helped heaps. It has taken some time to get him to understand that “taking a year off to get well” is not an option (and yes hes a nurse!!) but printing off info about PsA, giving him copies of my doctors reports and getting my Occupational Health Consultant to explain my problems with fatigue, has educated him on PsA. That being said I push myself to get up and get to work as I believe trying to live a normal as possible life with this disease helps me physically and mentally.
I'm so glad to hear Dr. Wyld is good :) So very sorry you are having such a rough time though! Hope you feel better soon....will be thinking about you..
Mlearning said:
I have heard of Dr. Wyld and he is a good doctor. The principal at my school told me about him as her mother and sister both have rheumatoid arthritis. My doctor is Emily Pineda. I have been happy with my treatment up to this point, but she is the only PsA doctor that I have ever seen.
I know College Station well. Both my children graduated from TAMU recently and they are both still living there.
I had my fourth Oriencia infusion today and for some reason it was more difficult than the three "loading doses" that I previously had. I had a horrible headache and nausea. After several hours sleep, I am awake but still not feeling well. Oh well, tomorrow is another day.
Keep in touch and let me know how your appointment with the doctor goes.
Thanks Louise.....I've wondered about printing off info for HR and/or my supervisor but wasn't sure how good an idea that would be....wasn't sure if it might be used against me in the future...
Louise Hoy said:
Hi, I've found that a good and open relationship with my manager has helped heaps. It has taken some time to get him to understand that "taking a year off to get well" is not an option (and yes hes a nurse!!) but printing off info about PsA, giving him copies of my doctors reports and getting my Occupational Health Consultant to explain my problems with fatigue, has educated him on PsA. That being said I push myself to get up and get to work as I believe trying to live a normal as possible life with this disease helps me physically and mentally.
You’re right to be cautious, I work for the NHS in the UK and I belong to a union, for all my sickness related meetings and Occupational Health appointments I’m accompanied by a union rep because while NHS does have very good and robust equality and diversity policies in place, the individuals that deal with my work life don’t follow them unless the “right path” is pointed out to them lol. When the Occupation Health doctors fill out forms on my behalf they are extremely careful when suggesting what I can and can’t do. I have had to appeal more than once on decisions and warnings given, because they actually did not follow the Trusts policy on equality and diversity, each time it was found in my favour so it pays to know you companies work policies. I made a point of discussing with my manager that this wasn’t going to interfere with our good working relationship and nothing was taken personally.
You can only work with what you have so if your not happy for people to know the extent of your life with PsA then don’t let on. It all depends on the relationship with management.The other problem can be that management changes!