This is my day for discouragement. I know everyone else feels the same way. But the pain is at a steady 10 today. I'm so tired of all that I have to do just to survive a day of work. I feel ridiculous with wearing knee braces and now I've added the TENS unit. I have to use it and take Vicodine to even get through the day.
I don't think I have ever gone out of a flare since I first got sick. I've had relatively few good days. But I've never had more than a couple in a row. I don't sleep more than five hours at night because of the pain. I do take long naps on the weekend. But that is basically collasping from the week.
I have to balance multiple doctors and physical therapy along with my work. The drive just kills me, shoulders, back, hips, neck.
At what point do you decide that trying to stay working is worth it. I just see myself getting worse and losing more mobility at a higher and higher cost.
I dont' want to go on disability because I love to work. But I would so love not to live in such constant pain where I am putting so much effort into just getting through the day.
Hi Deanna: You have to balance the stress of working with the pain versus not working and having less pain. You'll be able to deal with the pain on a different level when you don't have the stress of a commute and working.
Enduring pain, inflammation, and brain fog impacted my job performance. I had a very stressful job with the Division of Aging as an Advocate for 3000 senior citizens in the county where I lived. To do justice to the position and myself I resigned and volunteered 1 day a week with the senior citizens.
You'll know when it's time to give it up. If you can afford to do it, why do more harm to yourself? Maybe another job closer to home would be better for you. I don't know your circumstances nor what type of job you have but I do know that it's possible to quit or get another job that's friendlier to your RA. Even work from home. I do travel writing for several publications, not much money but it satisfies my creative side.
I truly understand what you're going through right now. It took me a year to finally reach a decision and it's the best decision I ever made.
It's very difficult to give up working when your identity is tied so closely to the job that you do. It's like giving up part of yourself. Your ego also suffers. But it's okay because you can take better care of yourself.
Lindy,
That was such a thoughtful, caring answer. It helps. Mostly, I am just afraid of losing income and medical insurance. I don't have any other source of support. That makes it really hard. I am a writer and an artist and so I should be able to find a way to do this.
Every day, I say to myself, I just can't do this any more. But I'm one of those people who hates to quit anything, even really bad situations. For me, it is more of a character flaw.
I have seven books that I've started and more on my list to do. But I need income in between. I just don't trust Social Security or the state to help me if I try and go on disability. But I also don't trust my body to hold together to be in business for myself again. That is also very stressful.
But your words and your experience are truly helpful. Thank you.
Deanna, I am an author/illustrator who has been supporting herself through teaching these last 30 so years. I am at the stage of going to a reduced workload next year so I can keep my health benefits. I know what you mean. It's stressful to continue work when you feel so ill but it's also stressful to think of not having income. I don't know about you but I've never made money from my art or writing. It's something I love to do and I look forward to it as a kind of retirement project. Right now I have two dummies for children's books with a publisher who is trying to find room for them on her list but probably won't. This is the story of my life. The publisher doesn't know about the RA and I don't intend to tell her. I'm waiting til I have a burst of energy to pick up the thread and try to get them published again. Sometimes I wonder if part of the RA business is supressed anger at not being able to do what we really want to do. I think when the time comes to stop work, there will be a time of fulfillment because we'll get to do what we enjoy despite the financial problems that will result.I guess I'm lucky in the respect that I have made a good deal of money freelancing both with my art and writing. I've been in business for myself a couple of times before. But it is stressful because the clients always want you working and there are deadlines that I find hard to meet now because of the unpredictability of my health. Also, when you get paid is unpredictable which is very stressful. And stress is such a killer for me now.
I would have to not only have to make enough for living and business expenses, but I would have to carry a very expensive health care policy. But at least I found some insurance that will take RA as a pre-existing. That was a big hurdle for me.
Of course, I meet deadlines at work now, but this job is much slower paced than others. That is one of the reasons I don't just change jobs. In my field, it is very deadline driven and they want you to be able to work 50-60 hours per week. If you can't do that, you're out. Also, my present boss, while a pain to work for sometimes, is very understanding about my needing to see doctors, etc. But is a very long commute and an unsatisfying job. I'm bored to death.
My goal is to write and publish my own books, and possibly the work of others. I know so many artists and writers. I'm good at the marketing side of the business, which helps.
I just can't figure out how to transition. Most freelancers work their regular job and freelance on the side until they have enough steady work to quit. I can't do that.
I've thought about teaching, but I don't have a masters and have never taught. Now, I don't know if I would have the energy to lecture. Again, I am afraid of being unreliable because of my illness.
I tend to agree with you about suppression and RA. I keep thinking if I start doing what I love that my health will improve. I do love writing. I am rather burned out on the commercial art and technical writing. I have to admit my soul really longs to be free to just express all this stuff that I've been building up.
It's kind of cool that we have similar loves.
It is cool Deanna. Ironically, my degrees are in Illustration and Art Education from the Philadelphia College of Art, now the University of the Arts but I usually teach other things like ESL, American Sign Language, or special ed. I have taught Art Ed on the university level. I think you could teach adult ed classes in writing and art based on your experience. The pay is not as high as for college teaching but it is rewarding and probably less stressful than teaching high school or elementary levels. Also it's the kind of work where they are always looking for part timers. Adult ed also includes classes taught at nursing homes where your disabilities would be appreciated.Community college teaching is another thought. Again, they love part timers because they don't have to pay benefits.
I'm trying to both write and illustrate my children's books so that I have control over the deadline process. If I'm working for someone else, I worry that I might miss a deadline. So far I've beeen able to maintain a full time job but it's taking a great toll on my health.I'm a member of the Society of Children's Book Writers and Illustrators but I've been too sick to participate for the last 2 years. What do you write?
I hadn't thought of teaching Adult Ed classes. There are lots of Community Colleges out here. I just have this fear of teaching since I've never done it. I love teaching people at work how to do things though. I'm really good at that. I would really like to work with those with disabilities. I think I might look into that. What I need is a base income to work from. Then I could pull in a few high paying freelance jobs on the side.
I started writing novels for the same reason you are writing children's books so that I wouldn't have the pressure of delivery by a certain time frame. I don't know why but novels come out. I always wanted to write children's books. But for the life of me, I can't even get a short story out. They are all novels.
I have one that I completed by hand while I was on a month's disability for work. I just have to get it typed up and edit it. It is an adventure-fantasy. I have several like that which I am working on. My favorite one is a Western. I grew up in New Mexico with a lot of farming and ranching and I guess it must have stuck with me. I have about 650 pages written on that book and I just have to fill in some holes and edit it.
My other writing is poetry. That just comes when the muse hits me.
My degree is in Commercial Art. I've done a ton of technical writing and illustration, design and marketing. I a whiz on computers. Totally addicted to them even though now I believe they are really hurting my shoulders, eyes and hands. So, maybe teaching is a thought.
Deanna, we have so much in common. I think you would be a natural at teaching. I have worked my whole adult life with both art and the disabled. I was a college and conference interpreter for the deaf. I taught art at the Pennsylvania School for the Deaf. I'm currently working at the high school level with Hispanic at risk learning disabled students.One of my kids books is on disabilities. One still on the drawing boad is on teen pregnancy through the eyes of a kindergartner.Lindy, your encouragement means so much to me especially tonight when I was feeling so overwhelmed. I am definitely going to look into this more. I love working with people, something I just don't get to do in my present position. People are what are exciting to me.It's strange that the 3 of us came together on this thread.
I'm an artist-mixed media and a writer. I started off as an RN, went to work for an insurance company and was the Editor of a health and wellness newsletter and technical writer in research and development for the same company. This was back 80's and 90's and just retired last year. I'm a self taught artist, have taken many classes and had some wonderful teachers.
One of my closest friends is an art therapist. She did art therapy with a chronic illness class that I was involved in. It was really an amazing experience to see people draw and paint the frustration with their diseases and sometimes even their happiness. It's an avenue that could be explored. You would have to go back to school but that's what they have grants for. If it weren't for my art I don't think my attitude would be as good as it is. Art for me is better than any pain pill.
Am working on a series of jungle paintings and the first one is an amazing black iguana with gold stripes around his body. I saw him in the jungles of La Pineta and he was 6 feet long. A divine animal. Let's not lose this thread, there's too much good stuff here. Have to go to bed now.
Hello ladies- hope you don't mind the intrusion. I'm a painter, photographer and writer as well. I went to Savannah College of Art and Design and got a BFA in Painting. Now I work for them in the Admission department... and I'm taking a free class this summer... Fiction Writing. My eventual plan (I'm only 23) is to teach high school art. I'm researching post-baccualuareate (I have no idea how to spell that) degrees and master's programs. Right now I just paint for commissions, I work part-time as an assistant to a wedding photographer, and I write just because. I need the steady income and health insurance... I'm still paying off college loans... retirement isn't anywhere in my near future. Hopefully the RA will bear with me. My employers have been very understanding. So neat to have so many with similar lives and frustrations! Now, I'm off to my first Remicade infusion... let's hope this works...Intrude please. It's great that we all have so much in common. I love it! Makes me feel better.Good Luck Trish!! Hope it goes well for you.Trish: I'm so glad you intruded. You live in one of my favorite southern cities. I lived and worked in Charleston for several years and love those old cities. Just thinking about them brings the most pleasant smells to mind, coffee, flowers, yeast, ocean, and humidity. I live in the desert now and miss those smells.
Give me all the details of your Remicade infusion. I start Rem. on Tues. and am a little anxious. Took Mxt. last night so I'm writing this thru the brain fog.
I had the Remicade before and loved it. The infusion is not too bad. Just bring a good book or something. Mine made me feel better right away. I'd still be on it if my insurance would pay for it.Infusion was cake (read: easy). I was all worked up over nothing... you'll be just fine on Tuesday! Definitely eat prior, but don't drink too much... you can't get up to go to the bathroom for nearly 4hours! I just brought a book and my boyfriend came to spend the last hour or two with me. He's so sweet. No more waiting... at least at my office, if you're on Remicade, you're a priority- finally! They took me right away and my nurse is sweet. The only pain will be the needle prick, but you feel that every time you get labs done, so you'll be fine. I nearly fell asleep, since I was in a nice leather easychair. I feel a little tired now, but not more than usual.
Savannah is the BEST. I can't imagine leaving and hope I'll never have to! (but I'm in love w/ a military man... so we'll see) Take care all, I'll write more soon!
Deanna, I did not read all the posts here so forgive me but I wanted to tell you. In my situation I thought, if RA is only going to give me limited quality time - do I want to give that time to my job that I love or to my family who I love dearly. I am choosing family. It doesn't change that I am so scared of loss of income and losing my job to one day maybe regretting it all. Tough choices but that is how I made mine. Good luck.On the Remicade, my doctor just hooks your IV up to a pole and lets you go down the hall. Actually, I believe you do want to be well hydrated (call to be sure) because it's easier to do the IV. At least that is the way I remember it.
Roxy,
I am so glad that you came to a decision as I know you have struggled so hard with it. I don't think you will regret as your heart seems to be there. Following your heart always seems to be the best way to go.
I'm happy for you.
hey Trish--My cousin went to the same college in Savannah. He is a bit older than you though--about 26 years old now I think. He had such a wonderful time there, and he has had a succesful career since.
It is funny how so many people here find release in art or writing or music. I think that as children we have those things in so many aspects of our lives, but once we become adults, so many of us lose it. If we dont take jobs that involve our creative sides, we just become sort of flat.
As I have sat here reading these posts, I wondered why I dont write or draw anymore. And I realized it is because I am afraid for anyone to see my thoughts, revealed on paper. If you say the wrong thing, you can deny it later. If you write it...it is forever yours. Funny how things change. When did I ever become worried about saying the "right" thing?
Trish, Deanna, Lindy, I can't believe the cooincidence of us all being artists, writers and having RA. I have another artist friend who has RA too. I wonder if we had some kind of chemical reaction. Maybe that cobalt blue really is toxic. I am continually impressed by the intelligence and creativity of the people on this board. It's not a disease for dummies.Crunchy,
You just have to start doing something creative again. You don't have to show to anyone. I started my creative writing again because I kept reading that it had healing properties. The next thing you know, I'm addicted. It has been one of the most healing things for me.
I have learned so much about myself and what I really want out of life now. I would say it was a real turning point on my putting a more positive spin on this disease.
I think if we bottle up ourselves that things do go haywire. Creative souls must breathe --not cobalt blue-- but the essense of life.
Most people never realize that the one person that they don't need to be afraid of is themselves. We are in our own skins for a reason. They belong to us. Even this disease is a manifestation of who we are, only it is the negative. How do we turn it to a positive? That's what our creativeness will tell us.
The more you start listening to yourself, the less the opinions of others will matter. And there is such joy in unwrapping what is inside. When I write, I feel free and untrapped by the restraints of RA. I can be strong, energetic. I can travel to places my body won't take me to now. I can fall in love. I can be the hero and I can be the bad guy.
Go for it, Crunchy. You are going to be amazed because even on here I can see there is this wonderful person. Imagine if you let that out into the world. Oh, the possibilities!