Re: Multiple Sclerosis

Hello, I am still here, and still undiagnosed. I have had many tests which have all come back negative, I have had a repeat evoked potential due to an abnormal one in 2005 (during neck surgery) I am still off of work. and have started a claim for LTD. I do still go to class (6 hours a week) and I am wondering if that is going to be a problem with my LTD> I have clinicals to get through starting in the fall and I am wondering if that is going to be a problem also. (there is a big difference between caring for 1 or 2 patients and caring for 35, as we all know) I just don't want to give up my dreams because of this illness, whatever it is. I really don't know how I am going to do clinicals and also work full time now that I have all this stuff going on. Has anyone else gone through anything lke this? I just don't know how disability works, I have never been on it. Through my work they will not allow me to work at all unless I am 100%. Thank you in advance and Happy Holidays to everyone!
Sharon

Re: Multiple Sclerosis

Hi,

I'm Patti and was so glad to find this group!! I've had MS since 1996 though I suspect it was causing problems long before. I've got Relapsing Remitting MS and for the most part have done amazingly well. Was on Avonex for 10 yrs until my insurance company decided to not work with Biogen and I had to stop since I couldn't afford it on my own (600-$900/mo!!). I took a long convoluted path that finally led me into nursing education and I finally discovered my passion!! I absolutely LOVE the work and it’s a joy to be able to be a “coach” to the next generation! Only problem is I am a diploma nurse, 59 yrs old and without that BSN, all I can expect is work as part time faculty while I have to supplement with other jobs to make a living (I'm single). I had one instructor opportunity last fall at another local college but as soon as they saw I didn't have the the "sacred BSN" they passed me by... I'm not ashamed of my status by any means and I find can see myself doing this work for many years to come. Only problem is I'm afraid to take out loans for the RN-BSN program because I have $90, 000 student loan debts to pay off (another career that I had to leave because of MS - long story). On the other hand, by getting the BSN, I am increasing the opportunity that I will be in a better financial position to eventually pay off those debts without the physical demands of regular nursing work... It's been a huge dilemma for me and I can't honestly say I know what the best decision is....

I know I have to decide alone so I don't expect any advice, but surely would like to hear anyone else's thots about going back for a degree at this stage of life. I might mention I am a VERY young 59 (to be 60 this year) and I look, act and feel like I am in my 40's and the majority of the time I forget I even have MS . The main thing that affects me is having to work supplemental jobs with long shifts and heavy physical demands. I recently took a job in a SNF to supplement teaching and since this SNF is huge with a very high admit/discharge rate (much like a med surg unit actually!), I often have ended up working long hours with no breaks and overtime . THAT did send me into a flare so I'm having to draw the line in the sand and am cutting back my hours there as I seek work elsewhere . THIS does get exasperating because I KNOW I'm good at teaching, but without that BSN, I can't expect anything more than limited hours. I found a very affordable program, but the issue I'm facing is taking on more student loans that I may never be able to pay back... It's a hard decision and I'm honestly not sure what the best path will be .

Good people have given me input both pro AND con, but ultimately I have to make the final decision.

I'm just curious to hear your input about going back to school later in life (even though I don't feel that old!!) in order to get a job that will better accomodate my health situation...

Thanks much!
Patti

Re: Multiple Sclerosis

Hi Patti,
I would think that with your experience with teaching and your enthusiasm for the job that SOME school would be willing to help pay for your education? I wouldn't bother with the RN-BSN either, I would go straight for the RN-MSN. It only takes a couple of additional courses and is well worth the effort. That is what I did, got my degree about 5 years ago and now I am an OB Clinical Educator working between two hospitals in the same system and very happy. BTW I was also diagnosed with R-R MS in '96 and I am 52 and on Copaxone.

Re: Multiple Sclerosis

I am struggling with where to go in my career. I am a career L&D nurse with some NICU thrown in. I have done the Clinical Ladder path as well as the management route. The past 8 years I have worked as travel nurse. That industry seems to be "drying up" with the current economic crisis.

I was diagnosed with MS while I was on assignment in San Diego. It actually coincided with my 50th birthday...somebody has to the on the downside of the bell curve. I do well on Avonex. I have had 2 relapses both brought on by serious infections.

I do work full time in a small Birthing Center. I love my profession and feel I have contributed to it in many ways. I am looking for a direction to go...educator/Women's Health Practitioner. I love to teach and precept. I do not want to give up my profession but seek a new direction with less stress.

And I am newly located in southern VT and do not know anyone with MS here. Suggestions/guidance/friendship/commiseration/ice cream sundaes all accepted.

Re: Multiple Sclerosis

pegsuern,
I am an L&D nurse, currently OB clinical educator, with MS since 1996. I live in CT and I am 52...so it sounds like we have a lot in common. If you want to you can email me . I only go on this board once in a while. Karen

Re: Multiple Sclerosis

Originally Posted by pattivt

Hi,

I'm Patti and was so glad to find this group!! I've had MS since 1996 though I suspect it was causing problems long before. I've got Relapsing Remitting MS and for the most part have done amazingly well. Was on Avonex for 10 yrs until my insurance company decided to not work with Biogen and I had to stop since I couldn't afford it on my own (600-$900/mo!!). I took a long convoluted path that finally led me into nursing education and I finally discovered my passion!! I absolutely LOVE the work and it’s a joy to be able to be a “coach” to the next generation! Only problem is I am a diploma nurse, 59 yrs old and without that BSN, all I can expect is work as part time faculty while I have to supplement with other jobs to make a living (I'm single). I had one instructor opportunity last fall at another local college but as soon as they saw I didn't have the the "sacred BSN" they passed me by... I'm not ashamed of my status by any means and I find can see myself doing this work for many years to come. Only problem is I'm afraid to take out loans for the RN-BSN program because I have $90, 000 student loan debts to pay off (another career that I had to leave because of MS - long story). On the other hand, by getting the BSN, I am increasing the opportunity that I will be in a better financial position to eventually pay off those debts without the physical demands of regular nursing work... It's been a huge dilemma for me and I can't honestly say I know what the best decision is....

I know I have to decide alone so I don't expect any advice, but surely would like to hear anyone else's thots about going back for a degree at this stage of life. I might mention I am a VERY young 59 (to be 60 this year) and I look, act and feel like I am in my 40's and the majority of the time I forget I even have MS . The main thing that affects me is having to work supplemental jobs with long shifts and heavy physical demands. I recently took a job in a SNF to supplement teaching and since this SNF is huge with a very high admit/discharge rate (much like a med surg unit actually!), I often have ended up working long hours with no breaks and overtime . THAT did send me into a flare so I'm having to draw the line in the sand and am cutting back my hours there as I seek work elsewhere . THIS does get exasperating because I KNOW I'm good at teaching, but without that BSN, I can't expect anything more than limited hours. I found a very affordable program, but the issue I'm facing is taking on more student loans that I may never be able to pay back... It's a hard decision and I'm honestly not sure what the best path will be .

Good people have given me input both pro AND con, but ultimately I have to make the final decision.

I'm just curious to hear your input about going back to school later in life (even though I don't feel that old!!) in order to get a job that will better accomodate my health situation...

Thanks much!
Patti

Hi Patti,
In my area most colleges want a MSN but they will allow a BSN to teach as long as they are working toward their MSN. Is that something you could suggest to the schools in your area with regard to your BSN? Definitely getting a job that offers tuition reimbursement would be helpful as kmrmom42 suggested.

Wish you well with whatever you decide and hope that if you happen upon threads here where students are being encouraged to take out mega loans for school and living expenses you can add your two cents. Life is just too darn unpredictible to count on being able to pay them back easily, imo.

Re: Multiple Sclerosis

You are so right about the "mega loans" that are being pushed on students. And it scares me that people actually consider student loans in those proportions. I was fortunate enough to be able to pay for my education (while paying off my husbands Health Profession Loans over a 10 year window). But I hear "youngsters" in the profession talking anout paying 1200 and 1400 a month in student loan repayment!! Life is way too unpredictable...as all of us MS'ers know.

My daughter went to school in FL and got Bright Futures scholarship thru the FL Lottery. That paid 75% of the tuition. But then there were all the OTHER expenses that needed to be paid. She has some loans and we have some parent loans. She entered the profession as a sales rep for a spinal surgical supply company and did extremely well financially. Paid off one of her student loans, bought a new car, upgraded her standard of living...AND boom, she got laid off after 10 months. The owners could pick up her accounts and the monies that were going into her pockets.

My daughter is extremely resourceful and picked up the pieces with cleaning services, pet sitting and personal appearances (she is an NFL cheerleader). And it has motivated her to return to college for a Masters. But she is wiser for the experience and back on a starving student budget!

THANK YOU for being realistic.

Re: Multiple Sclerosis

Originally Posted by pegsuern

My daughter is extremely resourceful and picked up the pieces with cleaning services, pet sitting and personal appearances (she is an NFL cheerleader). And it has motivated her to return to college for a Masters. But she is wiser for the experience and back on a starving student budget!

THANK YOU for being realistic.

Good for her! Too often when things like this happen its easy to become overwhelmed and kind of check out. I'm glad she did what she needed to do and is moving forward even if it means being back on a starving student budget.

Re: Multiple Sclerosis

I started working in this field in 1998, and was diagnosed with MS in 2000, divorced in 2003, I too have wondered how I will continue to support myself.. Hang in there!

Re: Multiple Sclerosis

i live in australia and have had MS officially since 2004 and unofficially since the mid 90's- i am also wheelchair dependant having lost one leg and the remaining leg is MS affected. I have reflex sympathetic dystrophy that has been a big problem too- I have managed to work part time telephone nursing for the past 9 years and most of the time i have managed that well. LAst year was one of those horror runs in terms of my MS, i was hospitalised 22 times ranging from one week to 5 weeks, so i spent well over half the year in hospital.

here in australia we have a government disability pension system and when last year was so tough eventually i was able to apply for the pension and qualified so that at least i had some income but i was too sick for the first 3 months and had no one to do it for me so quite literally had no income for 3 months. eventually some helped me deal with paperwork and then it has been suggested that i try to keep the pension active as a saftey net. I can only manage to work 15 hours per week- the rules for the pension state that your income must be under a certain limit (and that is definately not an issue as 2 days pay is not a great deal!) but the there is also a limit of 15 hours per week, so i am right on that threshold- i have had so much sickleave that i have been dropping below that so have just stayed within the rules but now i am trying to avoid more sick leave- work are beginning to lose patients and have threathened to make me casual instead of permanent part time- i can't pick up shifts at short notice as i need to fit around carers so casual work is not really an option- my supervisor suggested i apply to drop one hour so that i fit the rules for income saftey net so that when i am well i get no pension but when ill the pension kicks in again but i work for a state government agency and they have replied that 15 hours is the minimum for part time work, the pension is federal government and their rules are clear that i have to stay under the 15 hours even if it is only by 10 minutes. my choice seems to be drop down to casual but risk being unemployable because my health does not allow me to respond as a casual employee but i would have the pension ($560 per fortnight) or carry on working 15 hours so the pension stops and if i have another relapse i have to re apply for the pension when i am well enough to get to the department (so it could be several weeks with no income again) i also face the risk of the pension rules changing and such changes only apply to new applications- a few years back the cut off was 20 hours but they have cut it back and made it tougher now

i want to work and intend to for as long as i can, but i have to face the fact that my MS has reached the point where that is gettin really tough- i am worried that i am reaching the stage where i am becoming secondary progressive rather than RRMS - at the very least it is picking up in severity- by the end of a shift my vision is getting ropey to say the least and i am so exhausted by by second shifts end that i sleep nearly all day the next day.

i live alone with no family support, i feel so alone with all this stuff, work has been supportive until now but i seem to be in a strange sort of no mans land between being reliable enough to be employable or having to stop work. Its crazy when one government departments rule means you breach the others rule but if you comply with the second you breach the first ones rule!

does anyone else find themselves in that strange no mans land between being disabled to the point of not being able to work and yet working just enough that as long as you don't have a relapse things are OK- i wish i could feel safe that i will have a few good months at least now before having another relapse but this thing does not work that way- i know that old saying that the only certainties in life are death and taxes, that life is always unpredicatble but i just know the person who came up with that little gem did not have to deal with the added uncertainty of auto immune disease!

how do you guys deal with this kind of tight rope!