I was in tears by the time I left work today. I hate it when the doctors are right and I just can't do things any more. I feel like (and I know this is so common) that my life is being stolen from me a piece at time.
It doesn't seem to matter if I work from home or at work. Well, it is a bit better being home. I went into work today and by the end of the day it felt like somebody had been hitting my shoulder with a sledgehammer. It's both the computer and the drive.
I don't want to stop doing what I love. And, I don't want go on disability. But it is getting ridicuous. My knees are shot, my hip goes out routinely, my heart and lungs flare up seriously every couple of years and now my shoulders are rebelling as well. This is on top of all the RA and FM pain.
I want to be brave and strong. But tonight, I just want to quit. But what do I quit? My job? My refusal to go on disability? My art? My writing? I just don't have the energy level to do hardly anything else. By the end of the day, I have forced myself to use my last bit of energy.
If I didn't have here to come to right now, I don't know how I would cope.
I saw a very sad story on the Discovery Channel last night. This woman was being diagnosed with a very rare disease. The symptoms were so similar to some rather strange problems I have. She had Bechet's. Part of Bechet's is vasculitis which is inflammation of the blood vessels. It is part of the reason the doctor's freak out with me when anything comes up.
My kids don't want me to give up working because I'm kind of their hero. They think I'm invinceable. But I feel like I am playing Russian roulette.
I just need some way to go on this. I know a lot of you are working towards disability or have already obtained it. But has any one gotten without the help of a spouse or family for income support? If so, I could use any ideas that you might have.
If I quit my job, possibly even change jobs, I lose my medical. And, it is very hard to get on the state program here.
I don't want to give up the good fight. But I don't know what I'm fight for. It hardly seems worth it to struggle this hard every day and hurt so intensely every night.
Oh Deanna, I feel for you. I'm kind of going through the same thing. Working full time is just too much for me with RA, OA, Fibro and Sjogren's. I was doing better on the enbrel but I keep getting infections and have to go off. Now I have shingels involving my head, eye and nose and I'm truly miserable and wondering how I'm going to go back to school and finish up my year as a teacher and pack everything up for a move to a new school and half time position next year. There is such a fine balance between being able to work and being so burned out that work is all you can do. One doctor wants me to retire but if I do that, I lose my health benefits. My rheumy wants me to continue and I probably will try next year but there is a fine line between what's possible and what forces us into even worse health issues. Keep me informed about how it goes for you.Well, I'm not going to trade places with you and your shingles problem. I've been reading about that and your struggle to work. You certainly do know what I'm talking about.
Many people tell me I should teach, but I don't think they realize how exhausting that is. I'd have to teach at the community college level because even though I love younger students, I could not handle their energy. I don't have a master's and I would have to get one. Then, if you are just part-time, an adjunct, you usually don't get health benefits.
With what you know of the effort you have to put into it, would you recommend it as a job change?
I am caught between doctors too. Change careers, quit working, but do the paperwork? Although, my doctors have written three times for me already -- before this.
A lot of my friends tell me to write one of my books first. But I don't have the energy by the time I've been through work. Or quit and freelance. But you can't keep clients if you can't meet their deadlines. I am just fooling myself that I can do it that way because I've hit that wall several times now.
I am terrified of trying for disability though. How am I supposed to live until the government is gracious enough to put me through the wringer and possibly grant me disability?
I do appreciate your responding. I don't really expect anyone to have an answer. I just need to know there's life out there.
I truly feel for both of you. I am not to the point where you are at, but it does concern me for my future. With not having any other income besides mine, I wonder what would happen if I do get to a point where I can't work anymore. I have thought about buying the disability insurance through work, I need to research it and find out if RA is a reason they would cover. There is no way I could afford to go on SSDI and keep my house. That is another thing to look into is permanent disability insurance on the house.That's part of the problem. I already can't do so many things. I can barely do grocery shopping. I see my kids maybe once a week. I have no social life because I can't plan when I'm going to feel good enough to meet friends.
I do the minimum already. Get up and try to move. Down medicines. Drive to work. Take something for pain. Hook up the TENS unit. Work. Take something for pain. Drive home. Maybe do an errand. Fix something easy for supper. Do my physical therapy and then communicating here. On weekends, I do laundry every two weeks. Oh, and I go to the drug store.
Other than that, I rest. It's not much of a life. My writing was becoming my favorite joy and I'm losing it not to mention my ability to do art, which was my first love.
Deanna, Call your local school districts and ask about Adult Education. Even if you have to get your credential for it, you can do it all online now through various colleges and it doesn't require as much energy. What is your degree in?Got to have the health benefits. It's a real problem. You have to be below poverty level at least two month's before the state will even consider it. Not having minor children makes it even worse.
To make it more complicated, I often have to take off work for my health problems or emergencies for my daughter who is mentally ill. You can't just abandon a classroom of students.
I feel so unreliable any more. I used to work through anything and all kinds of hours. I was so dedicated and responsible.
Well, the online is a better possibility. I have a B.S. in Commercial Art with over 25 years experience in marketing, writing and design. I have tons of technical writing and business writing experience. Plus, I've done multimedia and web site, but I am out of practice on those.
Still worried about the time required on the computer.
I'd be very good at that as I am always sitting with someone at the hospital. Don't ask. It just happens. I did get a good scare though the last time with my daughter because I picked up a virus in the ER that made me extremely ill. Those stupid immune systems are always getting in the way. Can I have a new one now? Mine is all used up.
What do you mean I only get one? But it's defective. I want a replacement. What do you mean it didn't come with a warranity?
Okay, then, how about replacement parts. I'd go for that. First, you could do my knees, my hip and both shoulders. I could use a new heart and lungs. Oh, don't forget the eyes. And while you're at it, I'll take one of Roxy's tummy tucks.
Well, if you're not going to help me, then I guess I'll have to take my business elsewhere.
Yes, folks, I am losing it.
Hi Deanna.
I'm just a newbie here (the New Zealander) but I just wanted to say how your intelligence and fighting spirit really shines out through your posts. You are also very obviously a gifted writer!
I'm an archivist/records manager (which doesn't help you much) but one good thing that's happened to me lately is I've started a part-time from home job as an assignment marker for university-level archives/records courses. It doesn't involve too much computer data-entry either. Any chance of that kind of work in your fields of expertise?
All the best to you,
Wendy, what a touching thing to say especially when I'm feeling so down. That is so kind of you. You brought tears to my eyes. Of course, today, it's not too hard. But thank you so much for what you said.
As far as your suggestion goes, I really don't have any idea. But I'm adding it to my list of suggestions from people.
I really do appreciate all the suggestions and I am considering each one seriously. It's hard to break away from the known into the unknown. I used to be able to just jump out there and take risks. Now, I have this very uncooperative body.
I love to watch small children. They move with such grace and ease. It is beautiful. I have the same reaction to ice skaters, absolutely beautiful.
I think that of all athletes these days. I see dancers and people that can put the full weight of their body on their wrists and it just blows my mind. Even watching my daughter playing in the pool, I just appreciate those things now.Deanna I have to agree with Wendy...you have a fighting spirit and we all know how this darn RA can kick our butt and mess with our heads (sometimes for me they are both in the same place at the same time!)
Changing jobs is never easy, it's downright scary. I was a supervisor of 175 people, working 50+ hours a week (nights) and making 50K a year and gave it up for a job making 18K. People thought I was nuts but the stress was just too much! I had zero training as a receptionist but I jumped right into it.
Weigh out your options. From your posts you are very talented and extremely intelligent and I have no doubt that things will work out for you.
I have pretty much come to the conclusion that we are expected to work as much as we can, even if it ends up not being enough to live on, untill we damage our bodies to the point of collapse and then we can wait 1-2 years to maybe get some kind of help. Nice. Guess I had better start buying a lotto ticket every week.Deanna,If it werent for you I could have made a major mistake next week. I let my husband read your posts to me in reference to the epidural for my neck, He was alarmed to know that most drs need an mri before doing these as I was surprised to learn that as well. They had recent xrays of my neck and ill find out the results of those on wed but no mri. My heart goes out to you that your having such a rough time because you seem like the type of person whe truly jumps right in to help other people here when their having rough days. I hope things work out for you and your able to at least cut back on some hours at work, or find something where you can work from home and still get health benefits, I wanted you to know that you have helped me alot and I will keep you posted and let you know how my dr appt goes on wed to see if its my ra in my neck or the oa. Sending hugs!!Deanna,All of you have been so helpful and encouraging and with morning light I feel better. But it helps to have all these different views and thoughts.
ussmom, I think a lot of people helped flag that problem. I just hope you find the right treatment that fits your body. The neck and spine are such delicate parts of our bodies and I know a lot of people who continue to suffer a great deal of pain because there are so many therapies that are tried.
Just like in anything else, finding a good doctor that really cares about your final outcome is important. But starting with RD is critical.
I like hugs and return the same.
Beadturtle, I think getting away from everything for awhile is excellent advice. I think I just might do that tomorrow. I certainly do need the perspective. I used to go for long walks when I got like this, but now that quarter of block I can do just doesn't fit my problem solving needs. I can so relate to Roxy's need to hike, hike, hike.
I feel locked in a body that will not accomodate me.
Darn it...who has the freaken majic wand now??? Deanna needs it---so who ever has it...go on and give it to her right now!It is so good to see you posting again. I hope you are feeling better and that you will find your answers soon. Your husband a real keeper. I would give almost anything to be loved that much.
Keep working for an answer and I will keep looking for mine. I did work from home today and it was much better. Duh, it could be why the doctor suggested it.
Faith is the key and mine is lacking in the decisions that I need to make. I should know better as He has never let me down and brought me through some dangerous ground.
My spirits regarding it are much higher today as a consequence of all the wonderful support that I received.
Do be assertive in finding the answer to feeling better and let that white knight of yours help you fight the battle. Sometimes, you really need somewhere in there with you when you see the doctor to make them understand how seriously it all affects you. Plus, when you feel so bad, you don't always understand what the options are.
Hang in there and thank you for the nice note. I assure you that I am no angel. I'm just another sick puppy with whining tendencies.
Thank you and i have an appt monday with rheumy so keep me in your thoughts. You guys have giving me the courage to stand up for myself.
You bet I will. Take a list of questions with you. And, do let's us know how it goes.
Now, take the rest of the weekend off from worry and enjoy your wonderful family.
Deanna, I'm glad to see that you are feeling better. I wish I had an answer for you because whenever I've posted a problem you always seem to help me. In fact, you help us all on here. I hope your RA is behaving it's nasty self.You take care.
You try to rest this weekend.
Trisha Deanna, My heart goes out to you. If I didn't have such a supportive family, I would be scared to death. To get disability you cannot work more than three months while in the application process or you are considered able to work. The only thing you could do is find a situation where you get aid. I am so sorry to say this but it is all I can think of. I think of people in your situation all the time. Our social system SUCKS. It does not care for the weak and helpless. I have not read all the posts on this thread. I hope you get better suggestions but just know- we care. I always vote and try to see change but it is only getting worse. Can you find a place that is really cheap that you could survive. To be honest, I don't think I could possible work full time and you have more health problems than I do. I am so sorry
I'm still thinking out all the possibilities. I already moved into about the cheapest place I could. It's a mobile and I own it outright. It just kind of feel into my hands. So all I have to pay is lot rent and utilities. You just can get cheaper than that here. I'm confused about the three months factor in what you said. I thought you couldn't work at all until you got it. And, from what I've heard, it takes months to get the initial decline, more months to get the second one and then more months to get the third making the process one to three years. For some, I've heard it takes longer. If I'm wrong, please correct me. Working at home was much better yesterday. But I cannot do this permanently with my job. I've started looking into the online teaching thing. If I knew I only had to survive three months, I could probably do that. But the financial stress of it is a killer in itself. I've been with nothing and starving. It's hard to say, oh I don't feel so good, I'd like to go back and starve again and just hope this time, someone helps me. That's what I lose faith in. Deanna, I am so sorry you are going through this. It isn't easy. I work full time, and now am on a "project" locating charts for health records that have been missing for over three years. It is such a boring job, but the worst of it is that I am standing for the full 8 hour shift. I dont' know what was worse, running around for the hosptial all day, or standing in one place on a concrete floor.
It IS very hard figuring out what you can and can't do with the disease being active. As if working isn't hard enough, you have to figure in the weather. It has been raining here all week long... how about where you are? I don't really know how much weather does affect RA, but I know I can feel the difference. Hang in there. I am very new to all this, so I don't know anything other to say that I know what you are going through. One day at a time. I wish I could help more... Deanna my heart goes out to you along with prayers. I was taken off work in October of 05 and was told I could go online to start the disability process. They give you a confirmation number and keep it active for six months. I filled the online form out and then ss contacted me to set up the "phone interview". The guy I talked to pulled up the online report and the phone conversation only took about an hour-he already had mosto f what was needed and just verified. He told me that what took the longest was getting all the med info because a lot of doctors' offices take so long to send the reports to them. Then you also have to send them a signed form for each office that has info relavent to your case. He told me it's usually 3-5 months before the first ruling. I think the best thing to do is go on line to ssa.gov and research and get as much info together as you can-it'll help shorten the processing time. Some people I know get a lawyer from the et go and some wait til they have had their first rejection--doesn't seem to have changed the time frame. It really stinks taht someone who is having a hard time and can't work and realy needs help can't get it. I know a woman in our town who is healthy as a horse, strong as an ox, has more kids than a ballteam but she is a FIFTH generation "welfare mom." Her, her kids and grandkids are all taken care of by the state.....
I'll keep you and the rest of the gang in my prayers nightly and constantly check the boards to see how all is going. Deanna, You are allowed to work up to three months during the application process and they will call that "a failed attempt at working". That is not much when it takes so long to get SSDI BUT you might get it first time. You have a lot of health problems, it can't hurt to apply. I think you should go back to school. Apply for loans and grants. That is how I went to college and doing yardwork and cleaning houses. There is money out there for low income people, especially with your brains, to go to school. Just a thought. dar7733, you job sounds gruelling. I've done work like that in the past and I know I couldn't do it now. And, yes, the weather affects me a great deal. I'm like the weather forecaster at work. They actually ask me, "Deanna is it really going to rain?" Or, I'll say the day before, "I feel like it's going to rain" and there won't be a cloud in the sky. I asked the nurse at my RD doc and she said that sure affects some people. When the weather gets like that, they have a lot more patients coming in. Supposedly it is the change in barometric pressure. So the fluids in your joints are being stretched and that's why it is so painful. I'm not a direct employee either, but they have been willing to accomodate me to some degree. You might ask if they could vary what you do, say part of the day you do filing and part you do running around. I always do better if I can vary things. I appreciate your caring thoughts. Roxy, I can't qualify on the basis of low income at this point because they take a look at your last tax return. I wouldn't even consider school loans because I'm not sure I would be able to pay them off. That only leaves grants and scholarships. Vocational Rehab will possibly help fund your education but you almost have to force them to. They want to expend the lowest amount effort possible. And, it's been so long since I dealt with them, that I can't remember some of their rules. But I don't believe they give you any financial aid other tutution and books. What they wanted me to do was work and go to their training classes on top of it. I didn't have the energy to do that. And, as a contractor, I didn't see how I could have them come into my work place and start saying this and that needed to be done. They were going to try and set me up with a custom workstation like they do for the blind. I couldn't get it through their heads that wasn't what I needed. I'm an artist. My ex-boyfriend was blind and they set the computer to follow the tracking of the eyes. It eliminates the mouse from the equation, but puts more stress on my eyes. My eyes are too weak to carry the extra load. And, these systems are very limited in what they can do. Three years ago, they highly recommended I go on disability. Guess who is stubborn here. But then, I had kids still living at home. What else could I do? I'm sorry. It's just getting to me because when I read the suggestions and I try to work them out, I run into another part of my body that just won't work right. I hate this body. Plus, I think I entering another flare so everything hurts and I just feel like crying. Everyone is trying so hard to help and I so appreciate it. You have no idea how much it means to me. Most people just have this, "oh well, that's too bad, honey," attitude. And, the majority of people think that disability is an option that is available to them. We pay for this insurance through our taxes, but it's hell to get it out of them. Roxy, I don't really understand what getting a masters would do for me. I don't have the energy or ability to stand and lecture in a class room. Having a master's in the corporate world just puts you in high stress, long hour jobs. I love learning, but how would I use it when I was done? Hutch, How bad of shape were you in before you decided to file? I don't have family to fall back on for support. I'm still helping my kids make it, especially my daughter who is on disability herself. The rest of my family could give less than a damn. They have made that perfectly clear. My daughter gets nothing because it's SSI. I knew about the 2 year wait for medicare. I believe a lot of states will cover you in between once you fall below poverty level. That's what I don't understand. Why do we have to be completely impoverised and nonfunctional before we can get help and then have to go through months of stress and suffering? They have a program to help you regain employement after you get SS, but not much in order to keep it. Vocational Rehab thought I should apply to SS 3 years ago. They were useless in helping me find something else to do. Their goal is to get you working with the least amount of effort on their part. Still, I'm tempted to go back to them again. Hutch, I am awfully glad you made it through. But awfully sorry it is the result of so much pain and damage. Thanks for you comments. I am still torn as to what to do. I think I am going to investigate trying for a masters like Roxy and others suggested. Honestly, I don't know what my answer is. I feel so limited and so enclosed by this illness. I'm a bit afraid to go back to the RD at this point and say the working from home is not really helping. Because that's when they whip out the note that says I can't work any more. And that will be that. I won't be able to work and my life will fall into the spinning hole of trying to get disability. Of course, I only actually worked 2 days from home last week. But my boss is making it so difficult. She says yes and no at the same time. To keep income, I have to go in at least few days a week. But the end of a month's time, she's going to want to know what I'm going to do and I don't have an answer. She has watched me go down hill over a long time. Deanna, I've been following this thread and wanted to jump in with my two bits. First, thanks for all the support you've given me and others. You are a kind person who has a lot to give others. You are an artist, writer, and teacher. What about contacting publishers who deal in testing and education. Many of my retired teacher friends find work creating and editing educational tests. Other educational publishers use artists to do the graphic portions of tests. It's usually short term and often the work can be done at home or at their site. I think you could sign up when you were feelling up to it. They also hire people to score the now mandatory Exit Exams created by the No Child Left Behind law. You could do the language arts test after training which they would provide. In Monterey, a big publisher is McGraw Hill and I'm sure there are others.
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