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04/27/2012 10:57 PM

Transition to Becoming Disabled :(

Jen28
Jen28  
Posts: 108
Member

Greetings, everyone. First, I do want to apologize because I haven't been on here in the last few months. For those who don't know/remember me, I'm a 37-yr.old mom, wife, and high school English teacher with RSD in the foot/leg. I've had it for almost a year since my foot surgery. About 12 nerve blocks in the last 8 months have kept me able to work, and physical therapy in December/January helped me to be able to walk almost normally. The burning started going away from time to time, but I've still had painful flare-ups off and on.

I'm not sure if anyone can relate to this, but I've immersed myself into my job so much that I've tried to be in denial of my condition and I've been not doing anything different to accommodate this disability. I've taken on even more responsibility than ever, becoming the student council adviser/teacher this year, signing up for advanced schooling over the summer so that I can move up in my career... ignoring the flare-ups, pushing myself to keep being the over-acheiver, telling myself I can handle this. My love of my students keeps my happy (and in denial), and then I come home so exhausted that I often collapse and pass out and can barely manage to bathe myself and wash my clothes. I'm weeks behind on essay grading, parents are complaining... I can't put in the extra hours like I used to... I have to acknowledge that I can't keep up anymore. Being a 'hard worker' and 'the best' is such a huge part of my identity. But now I have to come to terms with the fact that I am disabled. I. Can't. Keep. Up. With. Everyone. Else. My career is going to suffer rather than progress.

The reason for all of this is that the RSD is now in both hands in addition to my left foot/leg. My hands have become swollen, stiff, red, and burning. I am terrified and scared because I think the reality of the situation is that MY CAREER MIGHT BE OVER. It hurts to pick up a text book so I can discuss Shakespeare with my kids. It hurts my hands to write and grade their work. It hurts to pick up my laptop and bring it home to work at night like I'm expected to do every night. It hurts to type. I can't stand for very long without my leg starting to feel like it's on fire. It's hard to get from building to building, carrying stacks of papers from the copier. It's painful to hold a writing tool to write on my white board. I can't focus and concentrate when I try to grade or make lessons, and the noise of loud teenagers during an RSD flare-up is unbearable. I can't be on massive painkillers and be a responsible English teacher. No kid deserves a doped up, suffering, incapable teacher - and I'm afraid that is the inevitable reality of my future if I try to keep teaching: being doped up, suffering, miserable, and incapable. It's so painful to write these words because I've worked so hard to get where I am, I love my career, and I'm a damn good teacher. My students make me so happy, and I can't bear the thought of losing that part of my life. But I have to face reality. I have to face RSD.

So my question is, with RSD in hands and feet, and having a successful and demanding career, where and how do I begin the transition to being disabled? How does this work? Right now I'm crying a lot, taking a whole lot gabapentin and hydrocodone until my doc can get back with me, and I've got to get through the end of the school year... final exams, lots of projects to grade, putting together a portfolio to prove how great I am so that I can keep my job. So much to do in so little time. I digress, though...

I guess one thing I'm really wondering, from all of you with experience of having demanding careers and RSD in hands AND feet... Should I try to keep working, or is that sheer stupidity? Is it time for me to get on disability? Can RSD be managed enough for a person to work at all when they have it in 3 limbs? Has anyone else done it, and if so, how? What accommodations were you able to make? What about cutting down hours and still working part-time? Maybe I could do that...? And just not teach as many classes...? I am a teacher with a 'permanent contract' (we don't have true 'tenure' here - most counties don't anymore). I can't just be let go or fired unless they tell me what I'm doing wrong, and then they have to take steps to help me improve. It takes three years to get rid of me! Do I start asking for disability accommodations? Do I need to get advice from a disability lawyer? I think I will contact my union rep (they've been getting $60/month for 4 years now, so it's time for them to help me, right?). Do I get some kind of disability rating from my doc and apply for disability? How disabled am I with RSD in 3 limbs? Could I actually keep working? Or am I just done now...?

Sorry this is so long. I am indeed freaking out. I was prepared for the RSD to slowly creep up my leg, but I never imagined it would attack both of my hands/arms instead. It just wasn't supposed to happen this way. And it wasn't supposed to happen this quickly. I had planned on sloooooowly succumbing to RSD, but my time is up, and I've got to make changes immediately. Any advice? I know I've not contributed much to the group lately, and I don't deserve help from those of you whom I've abandoned on here. Truly, I've not deserted you because I don't care or because I was cured. My RSD fire has just been turned down to 'low' for the last few months, and I've used that as an opportunity to advance my career, work myself to death, and be in denial and hope that I would be one of the lucky ones who could manage or even conquer this raging inferno. Nope. So, where to go from here? I would be ever so grateful for advice from anyone. *Blessings and hugs to all of you who are battling your own RSD fires.* -Jen

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04/28/2012 12:39 AM
cindy61
cindy61  
Posts: 543
Member

Jen I have had RSD for 10 years but for the 1st 3 years I kept trying to go back to work, I would work for 3 or 4 months and then have to take time off because I was in too much pain. This when on for a while and I only worked part time but I am a mom of 4 kids and had a large house and ran, weight lifted and biked. (the exercising stopped after the surgery on my neck) After about 3 years of trying and winding up at the ER with a $75.00 co-pay I realized it was not worth it and then applied for dissability.

What I should of 1st told you is I had surgery on my neck. I had a fusion at C4,5 and 6. Plus I have degenertive disc disease. After surgery heard a popping noise in my neck and was in severe pain ever sense then. It took them 4 years and many tests and nerve blocks that made it worse. My pain was in my neck, my left shoulder felt like an axe was driven into it and the pain went down my left arm and hand. I could not even use my left arm and by the time I got home from work my arm was almost purple and my hand was blue and cold. That is why I made that choice.

I hope this helps. Hugs to you!

Cindy


04/28/2012 12:53 AM
luckyduck

Hi Jen,

I was thinking about you just yesterday, wondering and hoping that you were doing well but now I see you aren't.

Stop pushing yourself because you are stressing far too much. If you can cut hours and try that then see how that goes but from what you say is happening right now, you are in no condition to continue like this.

I'm worried that your bones could be getting ate up. Have you had a bone density and a 3 phase bone scan?

I know not everyone here gets osteoporosis but many of us do have it so find out asap and then your doc can give you medication to slow down the bone loss. What does your doc say about you pushing yourself by continuing to work? As a forum friend I would say stop pushing and apply for disablity. You're spreading this fast is really scarry. Hugs and prayers, Lucky


04/28/2012 05:33 AM
rsdcrpsfire
rsdcrpsfire  
Posts: 2023
VIP Member
I'm an Advocate

Hi Jen

Please don't feel like you don't deserve any help or that you've deserted us. I'm proud of you for hanging on as long as you have. Your job is the best distraction that you could have had.

But..

You might want to consider slowing down now. It's going to be hard I know. I remember you and I remember how passionate you were about your work and your students when we first met you.

You have a lot going on. Lucky made a good point about Osteoporosis, I've had it for years now and I'm heading on my 12th year. Initially diagnosed with Osteopenia 2 years after, by 3.5 years after the injury full Osteoporosis. She also made a good point about what does your doctor say?

I would suggest having a heart to heart with your union rep. Time he/she works for that nearly $3,000 dollars. Smile

I think the best way to transition without feeling a sudden loss would be to go part time and begin reducing the amount of work and hours that you put in in other areas to get you ready for your future of disability. Just my thoughts.

I sense it would be devastating for you to give it all up cold turkey. You have to keep in mind that your health and well being, those hands and those legs/feet come first no matter how badly you want it to be your career.

You may want to get the paper work to file for disability just to have it on hand and read up on what you'll need to file. You can also file online.

I also think you should ask for work accommodations, anything to assist you and lighten your load. Your doctor can even help you with this.

Is there anyway you can get a teacher's assistant if you don't have one to be your hands on the white board or chalk board, assist with copying and so forth? Maybe they would assign you 2?

Just trying to think of things to ease the pain in your hands.

You may also want to seek out a counselor or psychologist to help you. The group here may be all that you need. Sometimes just being able to talk, share and vent with others who understand is enough too.

I bounced back and forth from denial to acceptance several times. It's not easy.

We're all here for you.

Very nice to see you again, Jen

Wishing you pain eased days and nights,

~Twinkle


04/28/2012 08:25 AM
Jen28
Jen28  
Posts: 108
Member

Thanks for all of your kind words and advice. As for a bone scan, it's never been mentioned by any of my docs. My foot/leg has been maintaining a 1-3 level of pain, and flare-ups have only been lasting a few hours to a few days over the last few months, but the last 3 nerve blocks only lasted a day.

They wanted to try a different approach with nerve blocks - scheduled 3 weeks from now: Do an epidural block, but leave a catheter in place in my back. Then have me come back the next morning to put in more medicine, and then come back again the 3rd morning. It would be another round of 3 nerve blocks, only 3 days in a row. I've been really hopeful about this idea! You know... shutting the pain down for 3 days straight reminds me of the 3-day ketamine coma that shuts down the (sympathetic) nervous 'system and allows it to 'reboot.' Maybe this 3-day nerve block would work like that for me!

But now my hands are just on fire. Typing is making it flare up. I can barely sleep, can't grade papers, crying a lot, eating junk food Tongue I will start working on things with my union rep. I think the only problem about transitioning to less hours is that I don't think our district actually has pat-time teaching positions. I think I could accommodations to do my job - my FULL job - or leave. I'm thinking the school district would at least have to try to find a different position for me, but honestly... what could I even do? Sad Geez.

What's even sadder is that my husband keeps trying to tell me that I'll just get some more nerve blocks and be fine. And then he leaves to go live the busy life that he's created for himself... the life full of activities that don't include me. Training for marathons, his job, taking college classes for fun, volunteering for search and rescue stuff... basically whatever he can find to keep himself 'booked' up full-time! He's not going to be happy with a disabled wife whom he has to take care of and who can't do all the things with him that he loves to do, and he shouldn't have to. Sad I don't want to be his 'burden.' I guess if he's never here, I won't be! Damn, I'm a mess right now!


04/28/2012 06:08 PM
maddiesgram
maddiesgram  
Posts: 2439
Senior Member

Jen,

First of all, of course I remember you and have thought about you often, hoping that you were doing so well that RSD was no longer on your radar screen. It breaks my heart for you to read all of this. Really, it's so obvious that you love your students and career and that it's so hard that your husband isn't too supportive right now. I'm just so sorry to hear all of it.

Please don't let too many things flood your mind like this, OK? It will be too much as it feels like it is from reading your posts here. Do everything you can to remember there is still hope. The idea of the blocks for your leg/foot sounds really interesting and maybe it will help get you back on your feet even better so then you can attack the arms and hands and see if blocks will help them. Or maybe you'll be the lucky one of us who can get the ketamine infusions and really get your life back! That's not a crazy hope or anything. Just don't think permanent when you might not have to. Maybe your battle will actually be won with this thing we hate. I believe it's possible and I'm a glass-half-empty type (sadly). Don't give up and think of just being disabled and a burden. Erase those words from your thinking for now and get geared up to fight more than you've ever fought before. I so want you to have hope.

Did you ever get the book called Remission Possible by Barby Ingle? She's the one who got into remission after many years of RSD/CRPS and she still has it with booster infusions. Get the book and see what you think. I can't afford it but maybe your doctors would be willing to do this with you. They sound great and like they really want to try things that will help you get your life back. Read the book and then give them a copy if you think that's something you would want to try. You might get your life back!

Will your husband talk about this? How about a bit of counseling for you and then both of you? There were times when it helped my marriage a good deal. But that's a different insanity story and we won't go there. You obviously have such talent and are in love with teaching and your students. That's a God-given gift that I sure wish more teachers had! Maybe for a while you could ask for changes in your schedule, I don't know how it works, or perhaps go into tutoring. There are "disabled" kids and you could relate to them like other teachers just can't. That might be a wonderful new life path for you.

I'm just sick for you that it has spread. You know I care about you, or I hope you do, and this group is here for you! I know your time is limited, so please do NOT put the pressure on yourself right now to start answering a bunch of posts here. I know you would want to be very involved if you're here at all because you're very conscientious. But don't put more pressure on yourself unless it's going to help you right now.

We're going to find a way to get you better. I don't know what it is yet, but I sure want to think there are ways to come if we don't know them yet. You've worked your tail off through this so far. You do need to try to get out of some of the stress somehow, too, though. Jen, be kind to yourself as you would be to any of us, OK? I'm so sorry you "had" to come back to this group, but know we are always here for you.

And, every day remind yourself to take this just one day at a time. It's a great AA slogan for a reason... it works. We can get through it just today but the pain of all the days ahead is too much to consider. God will give us the grace to get through it just today. Of course we each have to make plans, but the thoughts that become too much we have to set aside and just get through it today. When I truly do that, I can. I'm going to keep you in my prayers!

Hugs,

gail

Post edited by: maddiesgram, at: 04/28/2012 06:15 PM


04/28/2012 09:04 PM
cindy61
cindy61  
Posts: 543
Member

Jen I am so sorry that it has spread. Like I told you before I was 38 when all my problems started and now I will be 51 soon. I have 4 kids, worked part time, ran, biked and weight lifted, gardened, went out with friends, dates with my husband and now I can't do anything. My husband does most of the work around the house. Only my youngest lives at home and she graduates from high school this year. You married for better or worse, in sickness or health. You need to talk to your husband about finding things you can do together. When you get married it is both of you who needs to deal with problems. I know all of this is so hard being so young but you need to find things that you can do that does not cause you pain. I use to do a lot of work at our church too now I can't sit on those benches any more but I can try to help people on this site.

If you think you could handle part time try to find a school where you can do that or become a substitute teacher. Try to find things you and your husband can do ALONE!! You deserve it. I hope this helps. I will be praying for you.

Cindy


04/29/2012 01:26 AM
Jen28
Jen28  
Posts: 108
Member

Thank you both, Gail and Cindy, for your advice. I'm going to see if there is any way I can transition to part-time and what accommodations I can get. I don't want to quit teaching altogether... Being the student council adviser this year has been the highlight of my year, and I want to keep doing that! I took 26 kids on a bus to Orlando for a leadership conference, I've volunteered with them at the Ronald McDonald House, I've taken them to an a few volunteer trips to an after-school center for underprivileged kids, we've put on pep rallies, the homecoming court, dance, and parade... It's the kids who've done all this, and it's been so amazing to be a part of their leadership group! Right now we're doing elections for next year, and I'm supposed to stay after school for 2.5 hours each day this week as part of the interviewing committee for next year's student council. The executive board and I are basically selecting the kids I would have in the class next year. I think I'll get a sub for a few of these days, but I'll show up at 3:00 to do the interviews.

I haven't been able to speak with my docs yet about the spread. They're just not returning my calls. Two docs and a nurse work together as a team at the facility where I'm being treated, and I left messages all day Friday - and yesterday with the emergency service... but nobody will talk to me Sad I at least needed to talk to them about how to alter my medication doses. I've increased the gabapentin, but I'll be out in a day or so, and I've run out of Cymbalta, and I can't sleep for more than 4 hours at a time. I'm rubbing a cream all over my hands and arms that I had gotten for the RSD in my foot. It has ketamine, gabapentin, and lidocaine in it. I leave it on for 20 minutes and then rinse off, and it tones down the burning a good bit.

Gail, I think you are the most supportive person I've ever met! You have a special talent, a special calling, and a special heart for that. <3 If you ever thought about working or volunteering, you would be so great as a person who takes 'crisis' phone calls, as you always know how to say the right thing. I've thought about you, too, and I'm glad you're still here, connected with this community. I'll probably be able to be on here more once school gets out. I have a good deal of sick days and personal days saved up because during my first 3 years of teaching I was Super Woman and never took off work for anything (well, except for a few root necessary root canals - ugh!). For this last month of school, I think I will try to use a sub a few days each week. I need to rest, get caught up on grades, make final exams, probably go to several doctor appointments. I've got to get to schedule a formal teaching observation where my principal comes in to watch me teach and grade me. Then I have to put together this portfolio of everything I've done this year to actually prove that I've actually been teaching, using a curriculum, and using proven teaching strategies to reach all different types of ability levels and learning styles. UGGHHHH!!!! The only problem with that is that it's going to be super time consuming. Don't know when I'm supposed to actually teach! ha ha Gail, don't worry - I'm going to cut down my hours, use my sick leave, and take care of myself. 6 more weeks and school's out. I'm emailing the student council advisor who retired last year to see if she can help me with elections, etc. and I'm emailing my teacher's union to get legal and career advice.

Yesterday my husband told me he'll be here for me, but he's going to have to give up some of his career goals. He was going to go away for a year of special training for a job that would have him being gone for weeks and months at a time with the military. Now he won't be able to leave me home alone. We talked yesterday about moving closer to his family so I would have more support. If there is any way I can stay with my school and keep working, I absolutely will. I'm still gonna fight! You're right - there are still some treatments to try. Maybe because the RSD in my hands/arms is so new, it can still be tamed. And maybe the 3-day nerve block for my leg will put that fire out. That would be amazing! Smile But. But I think the reality is that any relief I get from those treatments will only be temporary. The RSD will always flare back up, and there's no way to just make it go away forever. I'll fight it off as much as I can, though! But it's still time to look into disability, so I've got a lot of work to do. I'll let you know how it's going, too. Thank you for being here for me - it means so much! My husband is trying... but when I'm in pain, I can tell he just doesn't want to be around me. He says I need to get counseling, and I do! But if we're going to stay married through this, WE need counseling together, right? He and my daughter are kind of on strike with regards to house work. The house is so dirty, and I hate it. Maybe family counseling would be more appropriate so that they can get told by somebody else that they need to step up. When I ask them to do anything, they seem to just get resentful that I'm not pulling my own weight. I'm not interested in stressing myself out over feeding everyone dinner, I haven't been doing the grocery shopping in the last few weeks, so guess what? Nobody else is doing it. My daughter has a chore list, and my husband won't make her do them. She even gets paid (pretty well, I might add!) for each chore that she does. Okay, well now I've maid the burning flare up with all this typing! I type (typed?) about 80 words a minute, too! Sad Take care, everyone, and thanks for listening and for your support. *Hugs and smiles!*


04/29/2012 06:01 PM
maddiesgram
maddiesgram  
Posts: 2439
Senior Member

Jen,

I'm glad to hear a little hope in your post above because I truly believe there are things that might help you as you said. And, the excitement about your students and all that you're helping them accomplish is very cool to hear from a teacher. I can really relate to the rewarding part of what you described as I was fortunate enough to go with my kids' high school on two overseas mission trips and was the only parent to go on both of them while my kids were there and getting to know these wonderful teens and help them along the way was one of the best experiences of my life. The parents who allowed their kids to travel with us really trusted me and the other two on each trip to be the substitute parent for over two weeks on each trip. When I read what you wrote about your students it made me flash back to so many good memories. All of the kids even came to our house every Friday night for a Bible study and I was the adult leader and loved every moment with these LOUD, silly, strong, scared, confident, unsure wonderful kids. I can see why you love it.

I think your family will realize they need to help more but more than likely it will be gradual for them as it has been for you and it was for each of us. There is denial going on in everyone. My daughter now is beginning to "get" that mom will not ever be the same mom again and it makes her very sad. For several years she told me that she just wanted the old mom back. I have even kept my hair long partly because she told me she wanted me to and I think it makes her think of me as more of the old mom. That's silly, but true.

So, if the stages of grief are true, there will come sadness and also anger before there will be acceptance. The stages might jump around a bit, too. If you're aware that you will go through these stages and also aware that THEY will go through these stages, then it will be easier to accept it when you see your daughter angry that you can't do something for her or with her. Your husband, too, will probably go through all of these stages because RSD does cause loss and grief follows the losses. Just remember when you see one of them angry or sad and it's YOU who is suffering, that they also are having huge changes in their lives. But, don't feel guilty!!! First off it's not your fault and secondly this is just how life happens. We are never promised to have easy lives without any problems. When our expectations are to have perfect lives, when reality comes crushing down on us it will be much more painful. We have to watch our expectations of ourselves and of others, too.

This weekend I really wanted my daughter to come help me with some things. I hated SO much to ask for help, and thought about it for days and longer before I asked her several days ago. I sent her an email and practically begged her to come see me this weekend at any time. She didn't. I was so hurt last night when I realized that she wasn't going to come. My expectations that she "should" help me since she hasn't in about a year and I really need it, were crushed. But, if only I had not expected her to come, I would not have been so hurt that she didn't. People can be pretty self-centered and when our illness goes on and on they grow weary of it in a way like we do. Anyway, I can almost be sure that my family will disappoint me in the future as they have for several years now, so when I don't expect too much I don't get as hurt. It's sad that it's that way, but it is, so when I accept it, it is less hurtful to me. Does that make sense? (I think I'm rambling-lol!)

Since you are really having a hard time with so many things it would be my suggestion that YOU go get a bit of counseling first and ask that person to tell you when to bring the family in. Sometimes in counseling it is better to learn from the professional how to talk to your family and other things before you do it. They suggest "I" sentences and things like that. To say, "I sometimes wish you would be home more" and not "You never stay home with me." That sounds silly but the other person really can get defensive fast when you say "You" about anything. Plus, the support would be good for you and to let you get some things out. Also, if there is a good pain psychologist new you they can help in many ways of coping with the pain.

I'm sorry I wrote so much but there were so many things I wanted to share with you. I hope that you'll take really good care of yourself until the end of school as much as possible. I'll keep you in my prayers!

Hugs,

gail

Post edited by: maddiesgram, at: 04/29/2012 06:08 PM


04/29/2012 08:24 PM
Jen28
Jen28  
Posts: 108
Member

I appreciate all of your advice so much, Gail! *Hugs* I have a name & number of a 'pain' counselor, and my husband said he would be willing to go to counseling with me. He's been great today, but I've had to tell him what I need... i.e. he had to cut up my food tonight. I can't type much. My hands are on fire. They are literally burning hot to the touch, too! I will try not to expect too much. I learned yesterday that I have to ASK because nobody can read my mind to know what I'm expecting. And he learned today that when I break down, collapse, and cry uncontrollably, I don't want him to stay away from me, and I don't want to have to ask for anything - that's when he just needs to hold me and be there for me the most. This is so hard, but we're trying to get through it - one day at a time.
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