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Posted

Well, I was renewing my nursing license as usual this summer and one of the questions they asked during the renewal process was if I have any condition that prevents me from working as a nurse. I stated yes, that I have a neurological condition. I got a call from the Board of Nursing asking for more information regarding my condition, so I faxed them my medical records from Mayo. I got a call the next week saying they'd reviewed my records and deemed it was unsafe for me to practice nursing. I can still sign my name with "RN" behind it, but I have to write "RN, retired." The woman from the Board who called me was really nice, and said that if I improve, I just have to send them a letter from my physician documenting my improvement including which tasks I should be able to do safely. Then she said my license would be reinstated and I would be observed for a few months in case I relapsed.

I think that's fair. It's funny, though, because sometimes I forget that I'm sick (kind of). I'm sure some of you can relate. Last week I was on a short course of high-dose estrogen which made me retain water and I felt the best I have in 3 years! (I'm off the pills now and back to "normal" :) ) But while I was taking the pils and my energy was improved, I was awake, my back and head didn't hurt, my skin wasn't burning, and I could think straight, I realized how sick I actually am and how much I ignore or take for granted feeling horribly all the time!

Anyway, I guess this just might make my illness a little more credible when I go to the SSDI hearing... :)

Posted

Hi thankful,

losing your nursing licence must be a horrible feeling but at least there is a way for you to get it back if you improve. You are right it should help in your SSDI case - if the board of nursing deems you too ill to be allowed to practice I guess they will have to pay attention. Essentially they are saying that even if you wanted to work at the moment they wouldn't let you because of your health problems.

Good luck with the SSDI.

Flop

Posted

Sorry! Did you just cry when you 1st found out? I've been a nurse for 15 years and have worked ER for most of them. After 1.5 years of trying to control my POTS symptoms I've finally given up hope of returning in the near future. I'm remaining optomistic long term but for now I finally applied for supplemental disability. The reality hit when my EP doctor wouldn't clear me to go back to the ER and do chart audits (not even pt care) prn due to the high risk of syncope. I've often thought my ER nursing days may be over. I can't get the hand tremors in control and they're worse when I'm stressed (Which pretty much involves any trauma pt) I guess I wouldn't want the nurse with the hand tremors starting my IV. Not to mention half way through the code I may pass out. My EP doctor joked about wearing a helmet if I returned. I didn't find that one all that funny. I guess I just figured some day I would return to a less stressful area of nursing. The thought never ocurred to me they may not renew my license. I've just been trying to figure out how to keep up my CE's so I don't lose my license and my CEN title. To work in the ER there were all those CE's required and the hospital always paid for them. Maybe I won't have to worry about that in the end. I guess looking on the bright side (which I've been trying to become better at) I would think it would be hard to deny a disibility claim after that statement from the nursing board. Best wishes to you on the disability claim. I'll send some prayers in your direction. What a frustrating illness!!!!It makes me shed tears just thinking about it!!

Brye

Posted

Your post broke my heart...HUGS!!!!

At least there is hope. You MAY improve...and work again. You could use your skills perhaps to do other related work, right?

Warmly, Jan

Posted

Thanks so much guys! You know, I wasn't really devastated... I think I thoroughly gave up returning to work anytime soon last year when my POTS worsened. I actually felt a little validated because I always feel somewhat guilty for not being a "productive" member of society. Like Flop mentioned, they essentially said that even if I wanted to work (I do!) that I'm too unsafe. I'm not allowed to practice nursing in any way, shape or form.

The thing is, I don't pass out like you do Brye. But the records I sent talked about all the other OI issues (dizziness, nausea, vomitting, tremors, neuropathy pain, BP and pulse fluctuations). I guess they would want those issues to be under control before I return. I'm sorry you can't work right now either.

In my state, you have to have worked 960 hours within 5 years to be able to renew your RN license. If I don't work within the next few years, I won't be able to return to work without going back to school for a nurse refresher program. That would stink!

I am very thankful at how reasonable the process is to get my licensure back when I improve! It was also kind of reassuring that the Board of Nursing has these reviews in place to protect patients.

My husband was pretty sad for me :) . He knows that I put myself through nursing school with a 4.0 GPA working 3 jobs. I think I had the beginning signs of POTS back then too (constant headaches that got better when lying down, grey outs, nausea). I still have my degree, even if I can't work right now as a nurse. I think I'll always be a nurse at heart. :)

One thing that helps me to feel valuable as a nurse now is when I attend my mom's cancer support group. Folks there are always having various tests and procedures and I can explain what is happening to them and what to expect. I also go with my mom to all her appointments. Her carcinoid syndrome is even rarer than POTS, and most appointments we feel we know more than the doctors do about her condition.

Thanks so much Jan, Flop and Brye for your kind words of support. I don't know what I'd do without Dinet!

Posted

I hope you will be well enough to return to work soon. Does a smaller dose of ERT help your symptoms any? I feel better when taking ERT but because of migraines & seizures I can't take it. Best of luck!

Posted

So sorry... I had to put my license on retirement status in 2003 because with -0- income I just couldn't afford it since I wasn't able to work.

But I know my way around the Medicare website and I help people file insurance appeals and such. I don't get paid, but it helps me feel like I'm making a contribution to the world.

Posted

When is your SSDI hearing? I just had mine 2 weeks ago, and one thing to remember to highlight is the unpredictable nature of our illness. We don't know how we'll feel from day-to-day, if we'll make it in to work, or even out of bed! If you have any questions about SSDI, you can PM me. Hope you win your case!

Jana

Posted

Thanks for your support everyone!

Jana, I don't have a date for the hearing yet... been waiting over a year. Oregon is extremely backlogged.

Alicia, the estrogen I was taking was for infertility treatment. But the gyno said that once we're done "trying" I might feel better on birth control (the kind that makes you skip your periods).

Thank you Dawg Tired and Bluesman. Yes, it does feel good to be able to do something useful! Don't underestimate your helpfulness - my mom has been trying to figure out Medicare also and couldn't have done it without a very helpful friend who knows the system well.

Posted

Janie,

Sorry about your license. My sister is a nurse, and I took care of her baby while she finished nursing school, so I know how hard it is. I would be watching her son to late hours of the night, while she studied, then he went to day care at 6 am. But it sounds like you have a good handle on it, and that is really good that you can get it back. I know what you mean about feeling guilty about not being productive. I am just curious is SSDI the same as disability? Because I got a letter a long while back (when they thought I was just nuts) that I qualified for disability, but when I called and talked to someone they took all my information, and told me that my husband makes too much money.

Good luck with the SSDI. Take care,

Suzy

Posted

I'm still trying to figure out the disability and how it works. I've applied for disability and I fall in the "husband makes too much money to qualify" category. That part has been denied already and now I'm waiting to hear about the supplemental type of disability that I think I qualify for because I've worked a certain # of hours over the past 10-15 years. I live in Arkansas and I'm not sure if different states have different criteria.

Brye

Posted

Yes....I think you should have no problem getting disabiltiy now...which is a mixed blessing eh? I got disabilty in June and i thought I would be so happy.....but it really made me down. I think this is what you are experiencing too. It made me happy that I didn't have to fight for recognition of my illlness but made me so sad that I am disabled.

I love my job. I was working so hard to get a promotion. I was in line for it and evenmy boss said it was a darn shame that my body just wouldn't cooperate. The nurse (who coordinates short term leave etc), said she had never seen anyone fight so hard to keep their job...she felt so bad for me when I had to finally surrender.

Good luck..

Erika

Posted

I'm sorry your not able to continue your nursing profession right now. I know how it feels to lose you ability to work steady employment.

Since you ahev filed for SSDI, try to contact your congressman/woman to see if you can expediate your case. I was able to do this, and I think I shaved a few months waiting off. At my hearing it was the medical expert who validated how ill I am, However, he said the information on my POTS wasn't enough, but he said my EDS is progressive and that is what I got my disability on. the information on my POTs was too vague.

Make sure you have good documentation on your POTS. I thought I did, and I even had a functional capacity form filled out by My POTs doctor. He stated that I was unable to handle full time employment.

Maxine :0)

Posted

Thankful,

My heart hurts for you loosing something that you are probably very proud of. I send hugs, as well as this thought... Nursing is one of the most caring professions, and regardless of whether or not you are able to practice again someday, you have undoubtedly touched many lives in the work you did. If you are able to return to work in the future, you will be all the better of a caregiver for having had the unfortunate opportunity to have dysautonomia.

Keep your head up and always be proud, and as your name says, thankful for what you have accomplished so far inspite of dysautonomia.

~ Broken_Shell :blink:

Posted

Thanks again guys! Your kind words mean so much!!!

Suzy, yes SSDI is Social Security disability for people who have worked in the past.

Maxine, thanks for your advice about expediting my claim. I do get long-term disability payments which are probably more than I'd get from SSDI, so I'm okay. I just know that I'll have to go to court at some future date.

I dream of the day I can work as a nurse again. I know I'll be a better person and nurse because of my illness. Thank you!

Posted

Just wanted to chime in and offer a suggestion. There are ways you can use your degree without actually having physical patient contact. Have you looked into nurseing consultation on line or by phone? I know when I was looking for at home work I came across companies that hire nurses to do that type of work. You know, like the nursing hotlines for Blue Cross/ Blue Shield ect.

It might be worth looking into!! Good luck and keep us posted! :P

Posted

Janie,

Sorry I am late posting this, but I have not been up to posting much this past week or so. Just wanted to let you know that I am sorry to hear that your licence was not renewed. I have a feeling that, like me, you were well prepared for the fact that you might not be returning to nursing anytime soon. As you know, I was doing a very limited return to work program, but it is discontinued for now, as I really was not able to do it.

Whether you ever return to nursing or not, your years of experience and kind heart give you much to offer in so many ways. I know you have a very positive outlook on life and that will help you see opportunities in the future. For now, enjoy your loved ones, and work on getting better. And remember, were God closes a door, he opens a window.

Take care,

Summer

Posted
Whether you ever return to nursing or not, your years of experience and kind heart give you much to offer in so many ways. I know you have a very positive outlook on life and that will help you see opportunities in the future. For now, enjoy your loved ones, and work on getting better. And remember, were God closes a door, he opens a window.

Thank you, Summer. I know you really do understand about this, and how inevitable this outcome was. I miss working, but am thankful for the years of experience I have had, as I'm sure you are too. It does make you a better person, and I'm sure we can always consider ourselves "nurses" at heart!

I'm sorry you've been so ill lately. I'll keep you in prayer, and hope that we both see and improvement in function soon!

Thank you for your kind words. I know you understand, janie

Posted
...I do get long-term disability payments which are probably more than I'd get from SSDI, so I'm okay. I just know that I'll have to go to court at some future date...

I am grateful for my SSDI approval this winter, as it will help me with insurance in another year when that kicks in. But in my case it doesn't add any money. Like you, I am currently receiving long-term private disability payments from my previous employer and the way the policy is written ... it says that if I am awarded SSDI they will reduce my private benifit by that amount. In addition they reduce my benifit by the amount awarded to my TWO CHILDREN who are still under 18. Seems odd on the surface that the private insurance can not only take my SSDI but that it can also take my children's award. You may want to read the fine print of your private insurance just so that there are no surprises.

As for me, I am just grateful they are paying. In another few months that one comes up for review, and I'll be back in the thick of red tape and paperwork again.

Good luck on your appeal.

Posted
I am grateful for my SSDI approval this winter, as it will help me with insurance in another year when that kicks in. But in my case it doesn't add any money. Like you, I am currently receiving long-term private disability payments from my previous employer and the way the policy is written ... it says that if I am awarded SSDI they will reduce my private benifit by that amount. In addition they reduce my benifit by the amount awarded to my TWO CHILDREN who are still under 18. Seems odd on the surface that the private insurance can not only take my SSDI but that it can also take my children's award. You may want to read the fine print of your private insurance just so that there are no surprises.

Ha! Wow, I'm shocked that they deduct the SSDI for your kids too. That seems ludicrus! I've read the whole LTD policy twice, and realized that I just have payments for 5 years, which is another reason I'd like to get SSDI before they stop paying. (in case I'm disabled for longer than 5 years, which I hope not) :(

Thanks for the heads up! I hope your next review goes well. Last review, I had my doc fill out all the usual paperwork, but I also submitted a Word document that I titled "A Day in My Life." It's so hard for them to get an idea of how everyday activities, like showering, are so hard for us. This way, I could elaborate on many struggles I have all day long. Next thing I know, they called and said I was approved for the next year of payments.

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