I am having a really tough time. I'm not sure how much of this is actually the lupus as I really have not learned what causes what. I was put on Plaquenil almost exactly a year ago followed a few months later by major back surgery on T10 to L2 in March. I spent the summer recovering and went back to work in late August and it was sooooooo difficult. I'm a college professor and I had previously made changes to make things as easy as possible on me - I bought a 3.3 lb tablet so I did not have to reach all over the boards (I write the notes on the tablet and it is projected onto a screen). I carry nothing to class but that and occasionally some papers. I collect about 80% less papers and let an online homework system take care of a lot of the work. One of the really difficult things is that most days there were no handicap spaces available. I think that walk from my car to my classes was most difficult and I talked to HR who said they were compliant and basically that it was just too bad that there were no handicap spaces available for me. I just had a second back surgery 5 days before Christmas (L4 to S1) and walking is very difficult now. That didn't start immedidately but it is very noticeable. I didn't realize how much but my first visit back at my old physical therapist had three people trying to figure out what is wrong with my walk. The next semester starts a week from Monday and I am so nervous about not being able to make it through. I really need to save my sick time and make it as long as possible towards retirement. I am also mid-divorce so I have to rely on my own salary.
Anyway, if anyone has ideas on making my job any easier, I'd love to hear them. I really want and need to be able to work.
How about one of those electric wheelchairs to get from your car to class, then back to your car? They are expensive, but I have a friend with Lupus who got a great deal on one on craigslist.
I also suggest that you make sure you're protected from the UV rays, if you have a long walk, as well as checking out the lighting in your classroom. Many lights give off UV rays and those that have exposed bulbs (like fluorescent fixtures) can be problematic.
I have issues with UV exposure in many places; stores, doctors offices, dentist offices, etc... I can go from feeling ok to feeling absolutely awful after 20 minutes under the wrong lights.
Good luck. I hope you can manage to figure something out. It's hard when you have to work full time and it makes you feel like you've been hit by a truck. I've been there and I sympathize with you (although I can't imagine having pain from back surgery on top of everything else).
Sharon
I'm a little bit reticent to use a wheelchair when my feet SHOULD do the trick plus do they fit in a regular car? Anybody have one? I keep seeing commercials on tv that make them sound like they are free i.e. no copayment with the right insurance. Thank you for the sunscreen/hat reminder - I really have to get used to doing that. I'm struggling with it though because I keep getting a rash...from moisturizers and sunscreen!
The college suggested I call for a ride from the police cadets every day but the only time I tried that I had to stand and hang around for over 20 minutes!!!
LynnMath, those wheelchairs aren't free, don't believe the commercials. Lol.
I only suggested that because it sounded like the thing causing you the most difficulty was walking from your car to the building and back again. I absolutely think we need to walk all that we can, but it sounded like that was causing problems for you. Ann A's idea of hiring a student to help sounds like a good option, and cheaper than an electric wheelchair.
Hope you can figure something out.
Sharon
Oh my - I thought of teaching online. It not only added a day to my weekly schedule (so I was oncampus 5 days instead of 4) but the platform we had to use to teach the classes was and is hideous and very difficult to use and the teacher of it simply awful. My school mailbox is now about 95% filled with user groups asking question after question for the platform (where we have to write everything for our online classes) so though it's a great idea in theory, it's awful in reality.
We just moved to a new building so I am going to have to see how this all works out when the new semester starts including parking, walking and teaching. It is possible too that in a few months things will be improved. I'm hopeful.
Lynn
Thanks, everyone. Any suggestions that any of you to make your life easier might benefit me or someone else so please keep them coming.
Lynn
LynnMath,
As a former educator myself, I went through something similar but in the opposite. 2 back surgeries first while going through a divorce. From that point on I had all of the symptoms related Lupus and everything that goes with it. I know it seems overwhelming however, vocational rehab can be a very useful tool. There are government agencies that specialize in adaptive tools to assist you. I went through voc rehab, but unfortunately still had to give up teaching. It is amazing the tools available to assist you, most you wouldn't even think of.
Having back surgery I understand that sitting is difficult, standing is difficult but I still highly recommend contacting your local Voc Rehab office. Back injuries are one of the most common adult injuries and therefore there are many tools available to allow you to continue as much as possible.
I hope this suggestion is helpful,
DeAnne
Hi DeAnne, That actually doesn't sound backwards. My divorce has been ongoing since before the back surgeries (but after the need became apparent). The lupus was diagnosed around the same time. I will check with the school about vocational rehab but I have already made many changes to make the job easier on myself such as writing all my notes on a tablet instead of on a board and minimizing the amount of papers I must carry. I no longer carry textbooks. They have tried to move my classrooms close to each other but it would be much simpler if they could all be in the same room so I would not have to carry the computer at all I had a smaller teaching load for over a year but cannot afford to keep doing that so I am trying to make it through a full schedule. At this point, just going to lunch sometimes is too much for me.
My biggest issue seems to be that not only do I have quite severe back issues (I have seven or eight discs fused as well as many other "repairs". None of it was from an injury) but I have very severe arthritis throughout the rest of my body. In fact, I was tested for immune diseases because the rheumatologist said that the arthritis was far too severe to be "normal wear and tear" and was like that of someone in their 70s or 80s (said at the beginning of my 50s). In the last few weeks, for example, my thumb began hurting for the first time ever (going to the doctor tomorrow to have it looked at) which makes writing and driving difficult. I think because of the adjustments I made to compensate for that, now my middle finger is in pain (my friend told me I should stop flipping people off, LOL). Anyway, I will talk to vocational rehab but I am feeling very pessimistic after so many experts have tried to help over the last few years. Some of it will get better when I can go back on my arthritis meds (they hinder healing so I can't take them for 3 months) and perhaps when the inflammation from the surgeries gets better but work is here now so I'll have to figure out a way to handle it. Thanks for the ideas.
Lynn
Lynn,
I just would suggest that you go in with an open mind. I worked with students with disabilities for years and one of my boyfriends headed the VOC Rehab office at the local college. Their entire job is to find accomodations to make things easier. They also have a lot of pull, such as getting you a closer parking spot. Certainly worth a try.
I have the thumb thing to...what a "pain"
Good luck,
DeAnne
Ann A has a great suggestion. Goox luck and pray they add anotber parking spot. Maybe have your doc write a Reasonable Accomidation letter requesting that walking far is very painful and you need to park in a handicap spot.
I believe Americans with Disabilities web site can give lots of options
I think I,m in a similar situation . At times I feel so much pain in my knees that it is almost unbearable. I am afraid that I will lose my job due to missing days at work because I commute daily from NJ to NY via public transportation. I don't know if this qualifies me as disabled . I am 61 years old and I have been trying to hold on until I can retire at the age of 62 but I don't know how it's going to work out. Any suggestions or comments