Help any one a teacher and have Lupus?

[whizzy35]

Hi I am a primary school teacher I have just in the last two years been told I have Lupus. I don't seem to eased any of my symptoms - fatigue, joint and muscle pain, migraine, forgetting things and saying wrong words for things, bits react badly, cut and scratches always get infected and take for ever to heal and always now left with scars.

Well what I am wonderning is if anyone else out there may also be ateacher and I am interested in any ways that you are able to cope with this type of job with this complaint.

I have been put on panquline or something like that and been on it for year and a half but it has made little difference to my symptoms.

I also find that I pick up anything that is going around the school.

All this I could cope with but recently my Headteacher has started to put in motion trying to get rid of me because of my illness and the amount of time I have had off. This is not excessive but she feels that the condition means that I am unable to do my duties to the standard she expects.

I would be interested in anyone else who may have some advice on ways to reduce my symptoms.
Anyone who is also a Teacher how do you manage?
Is it normal to have a flare up for this length of time? Is there anything I can do to help reduce the symptoms?

Thank you for your time reading this and thank you in advance if you can help with advice on any of the queries I have place on this notice board

Love and hugs

Whizzy

[Mariposa]

<span style="color:#993399">style_emoticons/<#EMO_DIR#>/foryou.gif Hi WHIZZY,

I'm sorry about your symptoms and the problems that are interferring with your career.
I completely understand your situation. See, I was supposed to graduate from the university this year with my degree in teaching. Unfortunately, my Lupus changed my plans and my future as a teacher are definitely on hold undefinately.

I can't be in an school enviroment because the flourescent lights make me sick, I'm usually tired, and my head is not always thinking straight like it used to. Plus, the children many times have colds, runny noses, infections, etc... my weak health can't handle it. So, I followed my doctors advice, as well as, the principal of the school where I was a volunteer and I quit my dream. style_emoticons/<#EMO_DIR#>/crying.gif

Very Sadly, I had to change my degree and my plans on becoming a teacher. My family and my health came 1st so now I'm still trying to pursue another dream. At the present moment, I'm still a student at the university and I will finish a degree in something... I still don't know what. style_emoticons/<#EMO_DIR#>/rotfl.gif

I would consult with your doctor and re-check your medications. Perhaps you need a different dose or different medicine. I'm sorry I was not much help, but I'm still in the process of learning about my Lupus.</span>

style_emoticons/<#EMO_DIR#>/hugbetter.gif <span style="color:#993399">hugs and butterfly wishes to you. :flowers</span>:

[raggedyann1]

Whizzy,

I am guessing that you don't live in the usa because of the term head teacher. I believe every country now has some sort of Disabilities and employment act and finding out what you have in your country can probably help you. In the usa our public school teachers are mostly union and so firing them is near impossible.

I am not a school teacher so I can't help with that angle. I do wonder why additional medications haven't been added to the plaquenil. The 2 main disease modifying immune suppressing meds we take are methotrexate and imuran. Generally the metho is used with joint pain and the imuran is used for internal organ involvement but that is not a hard and fast rule. Some of us tolerate one or the other better.
I would talk with your doctor about your continuing problems and see what can be added to help you feel better. Unfortunately the metho and imuran will make it even more likely you will catch every bug that goes around. I recommend carrying hand wipes with you and clean the door knobs and all before you touch them. This is what I do at home to avoid catching the virus' my son brings home with him.

Let us know how you get on.

Take care,
Karen

[angie1]

Hi Whizzy,

I am a teacher too, in Canada. I have had lupus for 17 years. I just started teaching full time 2 months ago and it is killing me. The only consolation I have is that summer vacation is only 3 weeks away. I had to take a couple of days off this week because I'm so exhausted. I was a substitute teacher for 7 years and this is my first full time position. I really think I may go back to part time in the fall. The money is not as good, but my health is more important than money. I don't have any suggestions on how to handle the fatigue because I have not been able to handle it very well. I rest a lot when I get home. I haven't checked on the disability system here in Canada because I don't want people to think I am lazy and don't want to work. Anyway, I hope everything turns out okay for you. Is part time or on-call an option for you?

Angie

[RachelSut]

I was a college teacher and in a similar situation. Luckily I have a supportive family who have helped me out financiallyand no dependants so I could quit teaching and do private tuition from home. I?m obviously a lot poorer but without any change of medication I am physically a lot better. My health just has to come before my bank balance. Don?t know if this is something you are able to consider but I have found there is quite a market for private tuition in the UK these days

Love
Rachel
style_emoticons/<#EMO_DIR#>/flowers.gif

[granola]

Good day fellow teacher! I am a Special Education Teacher in Michigan, USA. I have thaught the Severely Multiply Impaired and the Severely Menntally Impaired children ages 4-16 during my 18 year career. I suddenly came down with Lupus Nephritis within a weeks time and was diagnosised and started Cytoxan within 3 weeks. The fatigue was overwhelmimg. During my prep time I would lay down for a 1/2 hour in the lounge with a timer to wake up. This helped me get through the day. After the students left I would do some paperwork and then rest at my desk for another 1/2 hour so I could drive home and take a nap before dinner. Luckily I could shift some of the more strenuous work to my paraprofessionals who work in my class. They were the best. My family was pretty understanding too, as much as 11 and 13 year olds can be. I was fortunate to have doctors that could see me after work as well so I did not have to take off extra time for appointments. I thought I would catch more from them, but I guess I'm so used to them and my antibodies were so busy attacking my kidneys that I did not get more than a bad cold that would last months instead of weeks. If possible, use parent volunteers to help with the extra stuff such as cutting out projects, wasking materials, packing activities or zeroxing materials. They enjoy helping so you can focus your little energy on the education of the children. Best wishes, hope you have a summer break. In Michigan (only) this level of special ed runs a 230 day program so I only get 2 weeks off for summer break. Looking forward to heeering from you again. granola style_emoticons/<#EMO_DIR#>/foryou.gif

[Tam@->---]

Hi! I am also a primary school teacher! I was diagnosed 2 months b4 I graduated from uni, so only known teaching as a lupie chick! I was fortunate to have a very understanding boss at my previous position...... I have just changed jobs and had to see my boss yesterday to tell her bout the lupus as I hadnt seen the need until this week...... been long and I am exhausted! But she was very understanding and actually has a sister with lupus! I guess to date with employment I just have been a fortunate chick!
I dont have any advice sweets but I am available if ya need an ear at any point!!!

Smiles Tammy xox

[Maia]

I used to work full time and teach at the college level part time (as part of my job). I also had a daughter in daycare. The combination of being exposed to daycare germs, college students, and colleagues on a daily basis was just too much for me. I had to leave work on extended sick leave (probably heading for LTD but don't know for sure), and once I recovered from my last serious bacterial infection, I pulled my 1 year old daughter out of daycare. So far I am a little bit better.

I come from a family of teachers, and I know that most teachers new to the field are sick quite a bit the first 2-3 years (as are 1st time parents with kids in daycare). However, as you & I know (& everyone else here!), having lupus and catching all these viruses and bacterial germs is a VERY DIFFERENT matter than an otherwise healthy person catching these germs. It hits us a lot harder, and takes us longer to recover.

I hope it all works out for you... whatever you decide you need to do regarding teaching.

[londonteatime]

I was a secondary teacher until last December. I just couldn't do it anymore and had to resign my position. It's been a struggle for a few years but I thought I had another year in me. But when I returned last fall after the summer holidays, it didn't take long for Lupus to lay me flat. I suffered incredible fatigue, pleurisy and kidney problems.

I was out sick for weeks at a time and realized that this wasn't fair to me, the students or the school. So, I finished the term as best I could, turned in my grades in January, and applied for disability. Social Security agreed I couldn't work anymore and my disability was granted in just 10 weeks. I really tried to hold out as long as I could.

I honestly believe that teaching is one of the most difficult jobs to do when you have Lupus or another autoimmune. With children in your charge, you have to be constantly vigilant and on top of your game. You're on your feet most of the day and you can't go to the toilet, eat or drink when you need to. And you have dozens of pairs of eyes on you all day! Plus, you work hard all day and then have to grade papers on top of it. It's so very, very difficult.

I had been teaching for 5 years before diagnosis, so I had some degree of resistance to the kids' infections. But I did get conjunctivitis and a bug turned right into pneumonia. Since my students were older and could understand, they were careful not to cough or sneeze near me.

I wish you the best of luck in your decision! When I made my decision, my school district was very kind and compassionate -- they paid for my insurance as long as they possibly could and gave me some severance pay even though they didn't have to do that.

Julie

[cassy13thave]

I am a full time special education teacher and a mother of a 3 year old and a 11 month old. It has been about 10 month since I was dx. I'm just glad that I wake up in the morning and that is what gets me throught the day. I don't know if I'm tired from the lupus or having two kids and a husband that works two jobs. I just keep pushing. I have a job that is not stressful. I haven't really been six but maybe that is because I have been teaching for 7 years and have built up am immunity. I hope so. I haven't been sick with any thing really in years. All I suggest is that you do have older kids so that is less stress. just rest and sleep when you can. make big meals over the weekend so you really don't have anything to do but microwave it when you get home. I wish my kids were old enough to care for themselves. so just take it day by day.

[whizzy35]

Thank yo all for your advice and kind thoughts they have been of a great help and comfort!

Unfortunately the situation is no better with my head teacher and she is currently trying to remove me. Occupational health are saying that I should move on not out of teaching as such but away from my Head Teacher but unfortunately that is easier said than done.

Still I stay hopeful and take each day as it comes in the hope I just make it through one more day!

Thanks again love and hugs Whizzy

[GradStudent]

I was diagnosed while teaching at a Montessori school as an afternoon directress. After being in the sun each day, I began to get more and more sick. Eventually sores would turn into scabs and scar. I lost a ton of hair and lymph nodes swelled to the size of golf balls.

I returned to school full time, and decided I would finish my degree in elem ed. During student teaching, I found it extremely difficult to keep the energy needed to carry 19 class hours plus 30 hrs a week at the school. I got too scared to finish my degree in elem ed.

This past summer, I decided I missed kids. So, I applied for and received two summer camp jobs. I knew that the sun was a problem but I thought I'd give it a shot. I regret it so much. I'm miserable. I can't remember ever being this fatigued for this long of a period of time. It hurts to hammer up one nail. You know, that burning feeling... bleh.

Also, the stress involved with co-teachers who are un-educated or are educated but fail to follow basic protocol. The stress involved with being asked to do things you don't believe in... All of that combined with the fact that the sun was killing me made me walk after two weeks. :(

They never paid me for my 80 hrs and I now have three new emergency room bills, perscriptions, and gas money to add to my increasing personal deficit and new level of poor-ness.

I don't have tips. I guess I just have my story. I am young so I could be wrong but I think that an important part of this illness is setting STRONG boundaries for ourselves about what we can and can't do. I tell myself... "it'll be ok, I can be sick for a little while" just to get through my committment. Yet, now, I'm realizing that each time I get sick... I'm more sick than the time before... I'm killing myself to try and impress people who don't give a crud.

Good luck with finding some things to help but promise us that if it just gets too much, that you'll look elsewhere for employment. There are jobs out there with schedules flexible enough to allow us the rest we need.

Take care and be well.