I see that many of you still work, despite the exhaustion/pain. My question is, when life becomes 1. Work, 2, recliner, 3. Bed on weekdays & 1 catch up house/chores, 2.recliner, 3. Bed on weekends, is that life? I in the Dilemma of choosing to try for disability because we depend on my income to run household. Plus, work is such a huge part of my identity, who would I be if I no longer work? It’s a very emotional process on top of the physical. Any thoughts?
Mama Q..
I was lucky enough to have the cushion.. of my hubby's social security..
I knew my time was up ..... when all I did everyday was cry... I could hardly walk, talk, or think. The meds that were trying to help me... were messing with my psyche... and my sleep pattern... it was awful for almost a year. At work, I was messing up to the point of almost being fired before I left. Not to brag..but I was very conscientious to be the best employee ever. I was with the last company for 17 years....
The doctor was the catalyst... he said YOU ARE DONE!!!! The following Monday I went in... gave the note to my HR Director. He expected me to quit...
I would not!!..... I had contacted a lawyer in anticipation of this... and he said .. whatever you do... do not quit!! I said OK.... the director was flabbergasted.... he didnt know what to say... he finally said.. I cannot let you work.... you are let go due to medical reasons.... that is all I needed....
My disabilty went thru on a date.... I was on medical leave... it didnt make sense... I made sure I documented everything... I sent so much paperwork into the Social Security office... I probably scared them..lol..
My job was very special to me.. and to stop it abruptly.. was difficult... but I had to put mybody first and my mind second.... I knew I would survive.. Yes.. I do have some good and bad days, whether physical or mental...but keep your family close and talk to them... do not hide your feelings.... no matter .. whether they are positive or negative... it really helps, it is almost like grieving a death in family. I still talk to my friends at work.. and drop in to say hi.. once in awhile.
Good luck to you.. you can message me.. if u want to chat .... huggs
Karen
I wrote this in 2012, just after I began treatment:
Not only am I in pain because I didn’t get my injection of MTX this past Friday (taking antibiotics), but also today, I get told (in so many words) I’m not pulling my weight at work--after I tried to go in but I can’t lift my left arm enough to get dressed. Did y'all want me to come to work in my nightgown and uncombed hair?
I get that this year has been a struggle—I’m the one who has been dealing with that left arm that won’t go above my head without pain (even with therapy), can’t get back far enough to pull my hair back some days, can't get dressed without help, can’t carry a basket of clothes, let alone get anything out of the washer or dryer. I can’t lift a couch cushion. Sometimes I can’t get my meds out of the bottle without my hands shaking. I can't even eat a cracker without that tremor sometimes. Beating on a keyboard (I'm a lawyer; I beat the keyboard A LOT) is a struggle at times.
I get that I have seen a number of doctors this year, including two MRIs (for which I had to be medicated because I’m claustrophobic). I get that it took a looong damn time to figure out what was wrong with me--diagnosed with PsA on August 23. I think I've had it at least since 2006.
I started oral MTX on September 7. I get that I was out of the office that Monday-Wednesday because of overwhelming and unrelenting nausea from the MTX. Did y'all want me to come in only to run down the hall to the bathroom those three days? (I'm about a football field away from one).
I started injectable MTX on September 14. I've increased my dosage twice; gotten nauseous each time. I'm doing better but I get the icks for one day about every third week. (My blood counts are good). I get that I’ve been doing physical therapy once or twice a week since April.
I'm feeling better (believe me, I get it). I know I’m walking better, I’m standing up straighter; I’m able to sit in meetings without trying to find a comfortable position the whole time I’m there; I’m not horribly fatigued. But I still got the disease and this last month, I have had bronchitis, my favorite uncle die and an ear infection. And stress and illness are not good for an immune system which is already on overdrive.
In the middle of everything this year: nausea from MTX (much less but still there some days); never knowing when this idiot arm of mine is going to not work or when my fingers are going to tremor; pain, fatigue, doc’s appts; uncertainty; depression; I kept going. I’ve worked when I’ve been nauseous from the MTX; I’ve worked when my digestive system has been in an uproar from the MTX; I’ve worked when the fatigue has been overwhelming.
I kept filing good quality briefs. I kept talking to clients and driving long distances to visit them (with pain). I kept sitting in meetings (and paying the price that evening). Went to a two day conference in June, spent the next ten days recovering but kept working. I continued supervising my people (who have NO complaints about me; heck, they’re concerned about me making sure I feel well).
I have said nothing since April about the stupidity of my not being able to work at home ONE DAMN DAY A WEEK because "[I] live in the city where the office is located" and 2) how can you supervise out one day a week? I have said nothing about the stupidity of the other woman who does my job supervising working at home FIVE DAMN DAYS A WEEK (why does she get to? Because she does NOT live in my city, even though there’s a satellite office in her city).
I get all that. Now, even though my docs are not located here, because I live in the city where my office is, I’m being told I must come back to work, NOT come home and work here-- after going to the doc, unless it’s after 4 p.m.
I KNOW I’m lucky to have a job. I KNOW I’m luckier to have a job I love (most days), but the fact remains: I have a chronic, autoimmune disorder. I am NOT normal. All I’m asking for is a tad of understanding that sometimes coming in to work, leaving to go to the doc and coming home is all I can do.
And I’m damn frustrated at the lack.
I wrote this in 2013:
Nearly one a.m. here in Kentucky. I need to be asleep but I'm in the middle of a long night, in the middle of a bad week in the middle of a bad month.
I got sick a month ago yesterday and did without MTX for almost three weeks and basically wasted the two doses of Humira I had just started. I've had two doses of MTX and one of Humira and both of my hips, the tendons in my upper right leg, my left shoulder and left ankle hurt.
I motivate on and go to work on really lousy days because I'm already "sick a lot" as my boss says. She wants me to ask the doc what I can do to not be sick as much. How about not taking immunosuppressant drugs? Oh right, I was in worse shape before I started them. And I'm supposed to find out what I can do to not be off the drugs as long when I am sick. Right, can't do that either. Not to mention the discussion about being off Humira when I have my shoulder scoped in May.
I have to rest halfway on the walk to my office on a good day (it's over a football field away from the front doors). Yeah, that's real fun always needing to know where the nearest chair is. It's real fun sitting here in this chair, feeling my hips hurt. Real fun getting up and remaining bent over until I can move.
And yet because "I don't look sick" the perception is that I'm lazy and overweight and if I would just get up and move and quit eating so much, I'd be all better. Gee, that must certainly be why the admin whose office is nearest mine pokes her head in every now and again and asks me if I'm all right (she says she hears me yelp when I move wrong). The doc's tests tell me my sed rate is above normal but people can't see that.
Surely there are better ways of being noticed than walking around bent over and gimping on an ankle that's showing "arthritic changes" and encased in a walking boot and not being able to drive because my left arm won't move like a normal person's. Surely there are better ways of being noticed than having to make a phone call to one of the appellate courts in my state to ask whether I can do an oral argument seated because I can't stand for 15 minutes. I am neither lazy nor trying to get out of work. This is what passes for my normal. I'm trying to deal with it best I can within my limitations.
My rheumatologist made me feel better for about an hour on Monday--he told me it was normal to feel discouraged but that I had been sick and off the meds for quite a while (in psoriatic arthritis time), I needed to build up the levels again and give the Humira a chance. First time I ever heard a doc say he also knew I would not be feeling up to snuff because the cranky weather does a number on "degenerative arthritis".
And my husband talks about healing--how the hell do you heal the damage already done?
I KNOW I am much better off than a lot of people but frankly, telling myself that ain't working right now.
I continued filing good briefs and supervising 8 attorneys and one admin through a horrible 2013. The day before (yes, the day before I had left shoulder replacement surgery), my boss and her boss came into my office and told me that when I came back, I had better be improved or else I would be gone.
My first day back at work was January 6, 2014. I had pretty much decided I would no longer be a manager but wanted to talk to my people first. I did that and on February 4, 2014, I pulled the trigger and stepped down. I'm a senior attorney now--I've fallen in love with the job and what I do. My boss? Her boss? No better.
They have (quite unhappily) made some accommodations for me. I have a comfortable chair in my office. I roll a chair to meetings so I don't have to sit in horrible chairs. I still have to drive to see clients. Of course, I've sent out e-mail after e-mail asking to tag along with everyone else who has to do the same thing and have received zero responses. Who drives me? My husband on weekends and the odd Friday. Who drives me to meetings for this trial case I'm working on? My husband. When I'm at mandatory training next month, my husband will be going with me because I still can't walk long distances.
We had a fire drill last week--called by the local fire department to improve their procedures regarding our building. One of my colleagues wheeled me out of the meeting we were in; the Administrative Operations head was waiting at the main door for me and told me to stay by the elevator. My boss, who until then had less of a damn to give about me, suddenly decided to remain in the lobby as if she were with me. I told my husband that evening. I won't repeat what he said, but suffice to say, the AdOps head and the two colleagues who helped me got e-mails from him thanking them for caring enough to see about me.
Last year, I had a cancer scare. I had an ultrasound and an endometrial biopsy and got sent to a gynecological oncologist. The gyn-onc, referred to in this house as Dr. Easy on the Eyes, one of the top in the nation, told me I had cancer, the only question was the stage. He was very surprised when the hysteroscopy/D&C showed simple hyperplasia.
My boss? Made fun of me being so scared before I got the "not cancer" news because nowadays, EVERYBODY gets told it might be cancer. Not sure what part of I had a nurse practitioner, gynecologist and one of the top gyn-oncologists in the country tell me I HAD uterine cancer escaped her.
Then I end up in the ER of Frankfort Regional Medical Center on October 29, low blood pressure, tachycardia and down two units of blood. The two units were transfused from 1 am to about 4:30, then because I was so unstable, an ambulance transported me to the Markey Cancer Center, so Dr. Easy could see me.
I get home on Wednesday, feel wretched--Dr. Ueland wants me off until Monday but nothing will do my boss but that I come in on Friday. I did. I also got told I was not working a part time job.
Then after I got told I should seriously consider a hysterectomy, my boss tried to compare her decision to have a hysterectomy to mine. Tried to say the chance for children for both of us was long gone when the decisions were being made. She even said she knew she didn’t want more children but wondered what would happen if something happened to one of the girls. Seriously? It’s called having children, even if you’ve had trouble getting them here v. wanting children and not being successful at carrying them so that you don’t have children.
Why do I stay with the job? Because I enjoy research and writing. Because I enjoy being a criminal defense lawyer. Because the attorneys on the trial team never fail to let me know how much I'm needed. Because that trial client needs me. Because I enjoy working with a good number of the people with whom I work. Because I'm stubborn. Because I feel well enough to work--I'm feeling better than I have in 6.5 years. Because I know karma is a bitch and my boss will get hers. Because my boss will not win. Because what I go through with my boss is not even in the same class as the 15 months of terror I spent while my husband was in Kuwait and Iraq. Because, as we say, "it ain't Mosul (where he was stationed)."
All I’ve done for months is work, recliner, bed, ice/soak/smear topical pain ointments and repeat. The last 3 days of my workweek are agonizing. It amazes me how ineffective pain killers are. I love my job. It’s very fulfilling but it’s a struggle everyday to go to work. It is a 2-3 hour process to bathe, dress myself, and make a smoothie so that I can take my handful of pills. I haven’t exercised in over 7 months. I used to run, hike, snowboard, bike, and walk my dogs. I’ve lost so much that I can’t imagine loosing my job too.
I did work for 3 years after I really couldn't. After that they said they didn't have a job for me with my restrictions, then, I was gone by end of day. I didn't choose it.
Now I am so much worse. We are sometimes the last to know it's time. I really can't imagine going through what it would take to attend a job. I make as many Dr. appts as I can in the afternoon, and even so, it's like moving a mountain.
I only go places when I feel the best I can, or if I'm starving. I can't push a cart well and shop for small quantities for both the difficulty and pain of walking and pushing and I can't handle anything heavy at all.
I miss the people, but, you just can't make it sometimes. I have stomach trouble in the mornings and it takes a lot of concentration to take care of yourself. I did not have energy for myself and a job. I don't have enough energy to cope, let alone anything else.
I had two injections in the bursa of my hips today and haven't slept a full night in recent memory. Pain keeps me in cat naps day and night. How can you work if your tired all the time? Will you have an accident at work or getting back and forth? Even typing hurts when every finger hurts.
Those of us with a hard work ethic don't know how to give it up, I worked since the 70's till last fall, you should ask your Dr. what he thinks. I probably should have left earlier, I had several falls, and really narrowly missed striking my head on a concrete stair one time. I was miserable or rather, more miserable. At least I know that when I am up all night, like I am now that I can sleep whenever my body will let me rest or when, ultimately, I collapse. I don't know if I'll have money but I know I can't work.
Don't wait forever. I remember the desperate rush and how you have to push yourself through the pain. I was desperately clawing my way out the door in tears. Regular people do not have to give up so much to go to work.
Dot, you surely pushed yourself beyond! Where do you live, I hope it’s close enough that I could visit & help you out! I’m doing better, started Humira and its beginning to work its magic! I’m going to start back to work & see how we go & document every little thing that happens, for sure!
Thanks for responding, although I feel bad it causes you pain.
Dot said:
I did work for 3 years after I really couldn't. After that they said they didn't have a job for me with my restrictions, then, I was gone by end of day. I didn't choose it.
Now I am so much worse. We are sometimes the last to know it's time. I really can't imagine going through what it would take to attend a job. I make as many Dr. appts as I can in the afternoon, and even so, it's like moving a mountain.
I only go places when I feel the best I can, or if I'm starving. I can't push a cart well and shop for small quantities for both the difficulty and pain of walking and pushing and I can't handle anything heavy at all.
I miss the people, but, you just can't make it sometimes. I have stomach trouble in the mornings and it takes a lot of concentration to take care of yourself. I did not have energy for myself and a job. I don't have enough energy to cope, let alone anything else.
I had two injections in the bursa of my hips today and haven't slept a full night in recent memory. Pain keeps me in cat naps day and night. How can you work if your tired all the time? Will you have an accident at work or getting back and forth? Even typing hurts when every finger hurts.
Those of us with a hard work ethic don't know how to give it up, I worked since the 70's till last fall, you should ask your Dr. what he thinks. I probably should have left earlier, I had several falls, and really narrowly missed striking my head on a concrete stair one time. I was miserable or rather, more miserable. At least I know that when I am up all night, like I am now that I can sleep whenever my body will let me rest or when, ultimately, I collapse. I don't know if I'll have money but I know I can't work.
Don't wait forever. I remember the desperate rush and how you have to push yourself through the pain. I was desperately clawing my way out the door in tears. Regular people do not have to give up so much to go to work.
HELLO MY FRIENDS! I’m feeling lucky & happy, we won’t mention the other physical stuff! KAREN & SIXCATLAWYER
I’m not having luck teaching myself how to add friends & message, would love to, however!!! Lol
I’m thankful for finding you all and for BEN’S FRIENDS! It is a blessing to know you all.
I’m a lunch lady, so I’ve got a week left then rest for 10 weeks. I’m going to give it another whirl in fall! I’m so afraid of missing the social aspects and the kids are pretty funny! My co workers are, for the most part, supportive, when I flare. The daily pains & crawling home exhausted, not so much.
I’m coming to realize from your posts, I still have some work in me! My fumbles have been few, a few burns that didn’t require reporting. If it gets too much, my contract doesn’t hold me in any legal sense. I’m a wimp & I hate change! I need to get my head around the facts that I may not be able to do this much longer. I probably need to keep better records!
Karen said:
Mama Q..
I was lucky enough to have the cushion.. of my hubby's social security..
I knew my time was up ..... when all I did everyday was cry... I could hardly walk, talk, or think. The meds that were trying to help me... were messing with my psyche... and my sleep pattern... it was awful for almost a year. At work, I was messing up to the point of almost being fired before I left. Not to brag..but I was very conscientious to be the best employee ever. I was with the last company for 17 years....
The doctor was the catalyst... he said YOU ARE DONE!!!! The following Monday I went in... gave the note to my HR Director. He expected me to quit...
I would not!!..... I had contacted a lawyer in anticipation of this... and he said .. whatever you do... do not quit!! I said OK.... the director was flabbergasted.... he didnt know what to say... he finally said.. I cannot let you work.... you are let go due to medical reasons.... that is all I needed....
My disabilty went thru on a date.... I was on medical leave... it didnt make sense... I made sure I documented everything... I sent so much paperwork into the Social Security office... I probably scared them..lol..
My job was very special to me.. and to stop it abruptly.. was difficult... but I had to put mybody first and my mind second.... I knew I would survive.. Yes.. I do have some good and bad days, whether physical or mental...but keep your family close and talk to them... do not hide your feelings.... no matter .. whether they are positive or negative... it really helps, it is almost like grieving a death in family. I still talk to my friends at work.. and drop in to say hi.. once in awhile.
Good luck to you.. you can message me.. if u want to chat .... huggs
Karen
I am just in the process of having to leave work and go on disability because of my Arthritis and Multiple sclerosis. I am stressed, scared and deploy saddened. But, I know it is the right thing as I can not continue working and just existing. My children are suffering, my husband is suffering and I am as well. Besides the pain the fatigue is beyond stupid. I mostly go to work come home, collapse and repeat. Weekends are mostly asleep or if any energy found a tiny bit of chores (folding laundry as that is all I can do most days). I have no lfve and my Dr’s kind of pushed it knowing I LOVE my job and would not probably come to it on my own. All my friends and coworkers say they are relieved I am going off and hopefully will be able to feel better as they say" you have deteriorated before our eyes over the last 6 months to the point where we are so worried about you and crying for the pain we see you in". How come I am the last to know?.. I thought I was a smart woman and Nurse. With the letters in the process of being written by the Dr’s I am caught between feeling relieved and feeling devastated. You are right it is extremely emotional. For me I believe it is the right thing as I can see what my state of health and working is doing to my family. Does not make it easier or anything I like but, I am worried there will be worse ahead if I keep pushing esp if my dr’s say I should be off work. So hard
Kirsten, yes I totally understand that feeling of relief. For me it was such absolute gratitude that I no longer had to force myself and my body to do the impossible. Then alternated with feeling devastated at what I'd lost and an underlying sense of failure. This is the emotional load of this disease which is so underestimated and overlooked. Wishing you well during this transition period.
I wanted to add just a little bit... If i would have listened to my body..15 years ago (when my symptoms first started) I would not have the disease progression I do now...
A very good point Karen. I reckon a few people will be thinking this and possibly also tagging on that they wish their doctors had listened to their verbal complaints about their bodies too!
Karen said:
I wanted to add just a little bit... If i would have listened to my body..15 years ago (when my symptoms first started) I would not have the disease progression I do now...
Mama O., I too am dealing with the emotional roller coaster of work vs. life. At the ripe old age of 29 I decided to leave my hairdressing career to focus on my health and not continue damaging my body. I have been in pain for years with no one taking me seriously because of the fact I’m a hairstylist so all of my aches and pains were attributed to that. This past March I had a flare up that made me realize something more was going on with my body. I found an amazing rheumatologist and decided right then and there to no longer just work thru the pain anymore. Working through the pain has caused me permanent joint damage in my right hand and wrist, foot, and hips. I fear being crippled as I have many years to live with this disease. With my husbands support I left my career of 10 years a month ago and now deal with the emotions of not knowing my “identity” without my career and feeling like I’m not good at anything because what I’m good at I can no longer do. But at the end of the day I am blessed to be able to take this time to finally focus on my health. My career did not and will not ever define who I am. And life is too short to not live it! I now have complete control over every aspect of my life (accept my health at times) and it’s a freeing feeling. Best of luck to you and know you aren’t alone
You will know when it’s time! I worked route sales for Pepperidge Farm. I delivered Goldfish and bread to grocery stores. I started to use a walker about six years ago. After two years I finally sold the route. I lost two other businesses and a home! I went after disability, and got it within two weeks of seeing a disability Dr. Must have been a record! I had to wait two years for Medicare, because I was only 55 yrs. old. It took five years to be diagnost with PSA, take most all the drugs that is supposed to relieve pain, hips that are too far gone for replacement, and now bladder cancer surgery! Time to pursue life? I think so!
Mama o
Who is your Rheumatologist in Lexington? It took me four Rheumatologist and Dermatologist to find out what was wrong with me. I go to the Lexington Clinic.
CLG:
I see Dr. Abbas at Lexington Clinic. LOVE him.
clg said:
Mama o
Who is your Rheumatologist in Lexington? It took me four Rheumatologist and Dermatologist to find out what was wrong with me. I go to the Lexington Clinic.
All of this is scaring me. I am looking to go back to work Part-time so I can feel productive. All of my children are in school and I am finding I have lots of time on my hands. Wonder if I am wrong?
Hi rebel..
I was in the same place as you. It took me well over a year..to find myself. You will know if it is right for you..you can always try it..start slowly..with part time..listen to your body..remember you can always volunteer....it takes time to work through it..
Gentle hugs
Karen
Rebel mom, if you feel up to it go for it! I still work 40-48 hrs a week hard labor job and its actually stopping it that scares me the most. Mornings are hard but the movement is irreplaceable and afternoon is good. I struggle with being able to be totally energetic for anything else which makes s good balance on working days very hard with my kids. The longer you can push yourself seems to be key and for my family a requirment to pay medical and all the bills. If you don’t “have to” then you have very little to loose by giving it a shot and only regret later for possibly not trying. The menal accomplishments for a job well done works at any age or disability! Good luck!
I came to a point this year when I had to decise if I wanted to continue with the career that I loved and had to fight hard to get or if I wanted to take care of myself. Seven months ago I chose the latter and still wonder if I made the right decision. I just couldn't do my job well anymore. I was letting things slide that I normally wouldn't have, was in constant pain and was flat exhausted. I am currently trying to get disability insurance to come through, and think that it will happen. I have been on 3 meds that have failed, can no longer take DMARDS, and have pain, visibly inflammed joints daily, and crushing fatigue. This has been the most difficult part of this journey yet. I was a powerful woman with a respected, well paying job. It was very hard to let go of. That job wa the one that I had worked my entire career to get, and now its gone. It is a huge loss. But I look at what I am able to do on a daily basis and it is a harsh reminder that I made the right decision. When you can't bathe or take care of basic ADLs, you have no business trying to take care of other people. I have a hard enough time trying to coordinate my OWN care, let alone trying to do it for 50 chronically ill patients. There isn't enough time in a 70 hour work week to do all of that.
Most of this began when my insurance company changed their protocol on how they pay for Remicade infusins. They decided to no longer cover my doseing schedule, and since Remicade was starting to fail anyway, I was already planning to change drugs. Enbrel has been a bit of a joke for me. Very little response, and that is when everything skidded downhill, and fast.
Anyway, the choice to stop working is a difficult one. Whether or not you can afford it (Lucklily we can), whether or not you have the support at home that you need (family members who don't make you feel bad and agree that you are too sick to work), and how it will affect you emotionally (which will be more than you realize).