We all have some phrases, chain of words, or saying that just makes our hair stand on end, our heart beat raise a bit, and our mouths get dry. These are the dreaded things we must say at times to move on in life.
I have had six words that I knew I would have to speak soon, and I also knew the time was coming much faster than I pictured it; yet two decades ago when I became a nurse, I never thought I would have to say the phrase.
"I Have To Go On Disability." I made this choice, no one forced me, (although I feel that my back and the pain has forced me, for I have no other road to go down), yet it was a phrase I truly did not want to ever really have to utter.
This is changing my life completely. Not just immense financial issues, but the fact that I have to leave my patients. Although I was having trouble working, I never expected the rise in pain over the past year. It has been exponential. I adored my nursing jobs, whatever they may have been, and I adore my patients.
It was the Hospice patients in the two companies I did Hospice work for, that had grabbed my heart and never let go. I had found my niche. Where I belonged. I was one of those nurses that could say, "I understand", regarding your loved one being on Hospice, for both mom and dad died on Hospice, and I was the main caregiver for both of them. I stopped mid 2nd semester of school to further my nursing career, to take care of my strapping, strong 6 ft. 4 in. dad, that became a little patient, right in front of my eyes over a 2 month period. It all went so fast.
My dad, who won the body surfing championship in 1992. The dad that was the Senior Division Triathlon winner in Orange County. Hit the gym 3-4 times a week for hours. Ate the 'perfect' foods, and especially, didn't eat certain foods. So all that great food, and depriving himself of his old favorites, and keeping his body in awesome shape at 63, had no chance over the genetic power of Colon Cancer straight from his mom.
My professors were very empathetic, yet I could not keep any of the work or test scores from my 4.0 hard work of 1 1/2 semesters. I just wanted to help my father, the way he had helped me. Ah, life. Begins and ends. A circle that never stops. We played 'The Circle of Life' by Elton John at his funeral, (along with Eric Clapton's: 'Tears In Heaven'), to a packed church that stunned me, at how many people my father's life had touched. This was one year before my first surgery and one year before the pain started in seriously. I have been an 'adult orphan' for years now.
So, I have left nursing. I am a Disabled nurse now, and I suppose the correct term is 'Retired nurse', or how about 'Retired Disabled Nurse?' I just have trouble writing any of those words.
My life is so different now. I appreciate the little tiny things that I never paid that much attention to before. The bills keep on coming in. We all know that never stops. But the fear in me that I feel when I see them is new. I don't like this. But I knew I had no choice than to go on
Permanent Disability. My pain won. The battle is over.
Ironically, a new Showtime series called "Nurse Jackie", starring Edie Falco, had a preview showing on my free Satellite station last night, it is due to premier on Showtime tonight. I heard the intro, and it shocked me. I think that this show will bring up some heavy feelings in pain bloggers.
She said, "I am a nurse. And I have back pain. What is my choice..Unemployment?" And not to give the show away, but she then is shown taking all kinds of drugs throughout her shift, just to make it through the pain. Hmmm I'm not quite sure what I think of all that, but I will keep watching the show for now. It does give a very negative look at a nurse who is in pain. Why doesn't she go get an appointment with a Pain Management doctor? Why does she have to be shown illegally using meds that are supposed to be prescribed, not given from the doctor she 'knows' at the hospital, giving them both bad names? ***Will there ever be a show that chronicles the life of a nurse in pain that must stop nursing, and go through all the hoops and dances that have to be done, to be a self-sufficient 'disabled' nurse with back pain? I guess that doesn't make for such great TV.
"I Have To Go On Disability." There. I wrote and spoke it out loud again. Maybe the more I do so, the easier it will be to accept. My PM doc told me it is one of the hardest decisions for his patients to make, (I was in tears for days after I told him that was my final answer), and that I would soon feel a sense of acceptance of the entire decision. Along with that acceptance was to come that feeling of, "I did the right thing." THAT I know. That has been something I have needed to say for years, but I just kept pressing on. Leave nursing?? Me??
Yep. I have left. And now I am a Disabled and Retired Nurse. I hope that when I write my own life's happenings, there will be others who can relate. I have already met one online blogger who had to do the exact same as I have. Nurses have the largest percentage of back injuries of any occupation. But no 'injury' here. Just a back that is so messed up and in pain that it gives me no other choice. I will continue to write the posts that come from the view of a nurse; as once a nurse, always a nurse.
And I know in my heart, I did the right thing.
Saturday, May 30, 2009
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Life is quite a whirlwind ride of ups and downs. Amazing how we always keep striving. I do not think I can say much that will alleviate the feelings you have about this decision, but my intuition from your writing is that you have come to terms with this life alteration, and view the possibilities in change. My heart goes out to you, and if I could reach out to your hand through this internet line, I surely would.
ReplyDeleteGod bless,
Eric
ps: "gentle hugs for you as well" ;-)
It has taken me a long time to come to terms with the fact that I'm disabled, and it's still a challenge. It has been hard to know who I am without my career. This has allowed me tremendous opportunity to open my mind and think of myself as more than just my career, but sometimes I still mourn what I have lost. It's very, very hard. There are good days and bad days, just like with the pain.
ReplyDeleteWishing you strength as you handle this transition.
Diana
Hi Shauna:
ReplyDeleteBeen lurking here for a bit and now you have hit a subject that I also had to tussle with. Going on Disability and all the connotations that went along with it.
I was a PA for 18 years, then an RN, then an LPN, then a CNA, ---see the pattern. I started at nearly the top of the medical spectrum and worked my way down. Why?
Because as I was slowly becoming disabled and the ADA's provided were no longer able to "help" me keep working in a particular job/field, the ugly word "disability" kept cropping up.
As way of explanation, I was dx'd in 1976, while in 4th yr med school, dropped out and went through the PA course because I was told that the MS would always be an obstacle if I wanted to become a doctor - which of course I did. But 4th yr medical school seemed like I was wasting alot of education. So I opted for a brand new field called Physician Assistant. Never been tried before, never had there been a school for it before in Philadelphia.
As long as I didn't have to perform any surgical procedures, I was ok in the job. There is a lot more to why I had to give up being a PA on my blog so I won't go into it here. But suffice it to say, that "disability" was not the way I wanted to go. I continued to find SOMETHING to do so that I could stay viable and active in medicine.
Two years of school for RN (husband supported me $$$ so no disability apps yet), worked at that for 2 years before the unbelievable amount of pressure forced me to start looking for something else. It is now 2000 and LPN's are glorified CNA's. Worked one year as LPN and couldn't keep up with starting IV's, the amount of paperwork, and more pressure to remember in a job where short term memory does not cut it.
I "retired" on disability in 2007 after working as CNA from 2000-2007.
The correct labeling is retired. No one knows your check says "disability" anywhere unless you share that knowledge. Retired disabled is an oxymoron of sorts. You are disabled because of your MS but I'd much rather define you as retired. You worked at a wonderful career as a nurse and now you are a retired nurse. People have happy retirements; I don't know too many people who have happy disabilities.
As far as the world at large is concerned, I worked and then I retired. Although I happen to be disabled, I am happily retired from a medical career.
So are you.
Call it retirement and enjoy your good days.
Love,
Anne
P.S.
ReplyDeleteAfter 2 years on disability, I now work two to three days a month with ADA's in a critical care unit. I can work 4 or 8 hour shifts, so I don't get overheated (my main problems when working) and Social Security allows me to make $1000 a month over and above my check from them.
So you are not down and out yet. Rest a bit and look into returning to something in your field even if it is only for one or two days a month.
It helps keep me sane, keep my skills current, and lets me use my education positively instead of festering at home doing nothing in the medical field.
Think about it.
Anne
I had to leave classroom teaching on disability retirement when I was 46. After a couple of years of floundering, I decided to go back to school (online), got another degree, and then started teaching a little bit online. It's not the same as classroom teaching but it fills the empty space that was left when I had to quit teaching. Take some time to get used to the whole idea and then go exploring. Part time work, writing, educating patients in a different setting, and on and on -- the possibilities are endless. You're a loving, caring, open-minded individual who will no doubt discover many ways to connect with and help other people. Take this time now, just for yourself, and the rest will come in its own good time.
ReplyDelete((((((((((Shauna))))))))))
ps: these are online hugs -- the more parentheses, the stronger the hugs!! And since they don't actually touch they're even etter!! :-)
I'm so sorry for your loss and it is a huge loss. I felt the same way when I had to go on SS Disability. But I now am able to work as a blogger. I do what I can, when I'm able. SS knows about it and it's fine. I try to give back and teach others in my position about earning money through blogging. It has given me a boost in my self-confidence. But I did learn to love myself when I wasn't able to work at all too.
ReplyDeleteMy Chronic Life
http://mychroniclife.com
I am so, so sorry for what you are going through. Please try to get lots of rest now and do things to relieve stress. One day it will be clear in your mind what you can do to help others and give your life meaning and purpose. But now's not the time to force your mind into the stress of coming up with something. Take time to recover from the work you've been doing that's been overtaxing you, catch your breath, take a break from the pain by sleeping, enjoy beautiful flowers and your favorite CDs even if you have to do it laying in bed staring at the ceiling. Things that seem hopeless, I've found, often turn out not to be. You've been pushing your body so very hard for so long, and just existing without expectations for yourself for a while may be a relief for your body as well as your mind. I'm rooting for you.
ReplyDeleteDo you need me to pick up groceries or run any other errands for you?
My dear friend Shauna,
ReplyDeleteThank you so much for your words of caring and kindness. I am just so shocked at your last sentance. That just shows WHO you are, what kind of person, and it made me cry. We need to write emails hun, can't write it all here. Your comment is so sweet and I thank you from the bottom of my heart Shauna.
Gentle Hugs <3
Is there anything that can be done? I know so little about it.
ReplyDeleteDarnit, I feel that there has to be something doable. The problem's the bones, not the nerves, and if the surgery wasn't so terribly tricky...
I've got very minor idiopathic adolescent scoliosis, mild pectus carinatum, and meralgia paresthetica. Nothing, really, apart from possibly 0.01% of how you feel on your best day. Enough so I get the drift, without really understanding what you go through.
I feel so terribly helpless. It's just a mechanical problem, the balance between bone-laying-down and bone-honeycombing wrong. I'm sure you've done the research on calcium etc. Do we have any idea as to the cause?
There's many things you can do while disabled. I don't know if there's a comfortable position for you, but if so, there's things like suicide prevention lines that can save lives every day.
Sorry, it's at times like this I wish I'd gone into medicine rather than computing. So I could help.
Shauna, you owe me some tissue, girlfriend! The whole disability thing has plagued me for a few years now. With well meaning parental intentions, my dad tried to convince me to go on disability instead of continuing to teach, arguing that I would be more relaxed and better able to control the remaining Chiari symptoms. The hubster left the decision up to me, knowing that when the time came that I felt I was doing more harm than good for my students, I would give up teaching with no regrets. Then, along comes the budget mess, and retirement was forced on me.
ReplyDeleteMaybe you could do some hospice volunteer work on days when you are able? It would keep you in the medical loop and satisfy the need to help without putting too much physical pressure on you.
We need to get together for coffee one of these days!
Oh, and before I forget -- there's an award waiting for you over on my blog. :)
Take care of you,
Carleen
Hello Shauna,
ReplyDeleteIn reading this post it set me back in my chair a bit. I am so sorry that you have been hijacked down this road. It also hits close to home because this year at work I have been noticing that I can't do my job as easily (pain free) as I could last year. It messes with your mind and I, having always been the tough guy saying I'm not going to let RA dominate my life, am starting to doubt myself.
I still workout and ride my dirt bike all that I can because I am sure there will come a day when I can no longer do these activities as well.
You are a strong woman and an inspiration to many, you will continue to touch lives even though you are on disability.
Stay strong (I don't have to tell you that though do I?)
Terry
Hi Shauna,
ReplyDeleteThank you for your comment at my blog, Not the Life I Bargained For,
http://notthelifeibargainedfor.blogspot.com/2008/02/disability-approved-after-10yrs.html
I hope since you've had one no, you go get a lawyer. Make sure to ask others on disability who they have used. Perhaps the same name may keep popping up and they can start doing all the work for you.
I tried doing everything for years. Getting copies of your medical records (which you are entitled to) will show what your doctors really were thinking. I was surprised how much were in mine.
also, I'm a veteran, so obtaining my records just for my last 12 yrs. ended up being 2 ft. tall. I did take the time to go through and highlight all diagnosises and dates. It helped me organize in my own self what all I had been though in those years.
I knew no judge wanted to look at a 2 ft. tall medical record. My first judge turned me down because I was a single mom and still trying to earn money.
Social Security wants you to not work a year. I finally got to that point. But then, it took me 3 more years to just get a date to see a judge. (kansas is on the bottom of list for getting through disability cases).
In that process, I met someone and we married (yes, even with my problems, somebody wanted me). LOL. Because before that I had moved into a Veterans Home because I simply couldn't support myself anymore. My sons were almost on their own by then and went to their dad's house.
But truthfully, Living on Disability would not be possible for me financially. But being a nurse, you earned more than I did and hopefully that can work out for you.
Good luck to you and get a lawyer. You don't have to pay them until you win. (make sure that's the deal).
thanks again for visiting my blog and if you don't mind, I'd like to add you to my blog roll and you are welcome to do that with mine although I don't write on it much lately, I really need to get back to it. thanks.