I'm a GN Nurse w/ Sarcoidosis

iwanna · Aug 22, 2007

Chloe,

Hi, I have sarcoidosis as well. I am an LPN. I started out to be an RN, but the illness interfered. I became an LPN in 12 weeks because I was in RN training up until almost my senior level, then had to leave because I was sick. So, I could not return to RN course for another year because of the way the classes were scheduled. And, even then I got sick at the end of LPN class, I missed the last 2 weeks of school because I was in the hospital. However, they gave me diploma, anyways. (I did not have to take final because my grade was high enough already)

But, never let your future employer know that you have an illness. Why would you want to tell them? You can let them know after you have been there awhile. I am currently on disablity and thinking about returning to work force. I was the major wage earner in the household, and we really got way behind with our bills.

But, really there is no reason to tell potential employer that you have sarcoid. What type of job are you seeking? Hospital nursing? MY last job was in psychiatric hospital. I lasted 4 years until sarcoid was exacerbated.

Now, I am looking to return to work, but don't know what to do. I am very limited with an LPN. Also, I am now 50. The best job that I had that wasn't too bad with my illness, was working in drug rehab. Unfortunately, they closed. The worst job was working in a nursing home. MY job in psychiatric hospital was challenging at times, but it was do-able for a few years. I liked it and we had good team workers.

I was 39 when I went into nursing. I had symptoms off and on since 1988, but never had a diagnosis until 1996.

What does your doctor say? Are you seeing a rheumatologist?

Well, I wish you the best of luck.

Chloe'sinNYNow · Aug 22, 2007

Chloe,
Hi, I have sarcoidosis as well. I am an LPN. I started out to be an RN, but the illness interfered. I became an LPN in 12 weeks because I was in RN training up until almost my senior level, then had to leave because I was sick. So, I could not return to RN course for another year because of the way the classes were scheduled. And, even then I got sick at the end of LPN class, I missed the last 2 weeks of school because I was in the hospital. However, they gave me diploma, anyways. (I did not have to take final because my grade was high enough already)
But, never let your future employer know that you have an illness. Why would you want to tell them? You can let them know after you have been there awhile. I am currently on disablity and thinking about returning to work force. I was the major wage earner in the household, and we really got way behind with our bills.
But, really there is no reason to tell potential employer that you have sarcoid. What type of job are you seeking? Hospital nursing? MY last job was in psychiatric hospital. I lasted 4 years until sarcoid was exacerbated.
Now, I am looking to return to work, but don't know what to do. I am very limited with an LPN. Also, I am now 50. The best job that I had that wasn't too bad with my illness, was working in drug rehab. Unfortunately, they closed. The worst job was working in a nursing home. MY job in psychiatric hospital was challenging at times, but it was do-able for a few years. I liked it and we had good team workers.
I was 39 when I went into nursing. I had symptoms off and on since 1988, but never had a diagnosis until 1996.
What does your doctor say? Are you seeing a rheumatologist?
Well, I wish you the best of luck.

Hi Iwanna!

I'm also 39! and as long as I have no flare ups of e.nodosum, I stay in denial about having this thing. Who's to say my chronic fatigue and joint pain isn't due to years of study and poor posture? Who's to say my dry coughs aren't due to years of smoking ( I've been quit now for 1 year and 3 mos, but who's counting?)

I have this latest flare that how refused to wane. It's obnoxious painful ugly and did I mention painful? Looks and feels like I was beaten across the legs w/ a baseball bat. OUch.

I just don't meet any other criteria for this disease. But I feel sometimes like I've put myself thru a lot of school, sacrificed my 30's and any chance of mommyhood, and spent a lot of $$ to have nothing to blame for my few symptoms. So far all xrays are clear. blood work, same.

My student health insurance ran out 7 days ago. I tried to get in to see a Rheumo., but last time I saw this doc, I was asymptomatic and when flares got too big recently I went to see her while still insured. I was told she's no longer practiccing and new doc wouldn't biopsy me without being established as his patient first. I ran out of time. Now I'm out of insurance. Until I can land a job.

So I'm achy, but won't tell. I wear dress slacks to interviews. But I got my RN to go w/ my BSN this weekend. Need a job. But no one will hire new grads w/ no experience.

The oldest story in the book.

HM2VikingRN, RN · Aug 22, 2007

Psych nursing is usually a fairly open field...

Chloe'sinNYNow · Aug 22, 2007

Psych nursing is usually a fairly open field...

I wouldn't mind psych at all, but I am afraid that my future would be limited. I need to find a job (prob in a hosp) where i can work on my skills. As it is, my last semester was mostly psych and community health. I think I"ve forgotten how to put on my stethoscope. I'm kidding of course. Just really out of practice.

iwanna · Aug 22, 2007

ChloeinAtl,

First, you need to get the sarcoid stabilized. Are you any meds? I know E. Nodosum well, and it can get to the point of severity where you cannot walk. I have been there!! However, my Sarcoid has been in and out of remission over the years. And, stress seems to bring it on. You need to make sure that you eat healthy, little exercise, and very important to get proper amount of sleep. I am just speaking of my own experience. If I did not get enough of sleep, I would feel miserable the next day.

At first, I was good about refusing double backs. e.g. working afternoon, then dayturn. Then, the psch facility where I was working was expanding to geri psych. The LPNs were offered 3 12 hr. shifts and make up the additional 4 somewhere. BUT, the 12 hr. shifts turned out to be actual doubles. And, they were back to back. If I was lucky, at most I would get 6 hr. sleep in between shifts. We were able to use our clinical skills in geri psych. Most of them had dementia and on many meds. I thought that psych would be less phsyically demanding, but I was wrong. I worked children's, adolscents and adults.

Actually, the the least physcially demanding job was in the drug rehab. For me, my choices are more limited, as most of those jobs require RN and not LPN.

What type of nursing are you interested in? I have been told to check into working in a specialty dr. office. But, the pay is considerably lower.

As, I said, I need to increase our income. I never wanted to go on disabilty because it is a lot less than what I was used to earning. My husband lost a fairly decent job, but now can't find one that pays a little above min. wage. He is 59, and his back is shot. I know that I can't count on him to make more money.

Funny, I never wanted to go on disability, but now I got used to it. I have a grandbaby, and an elderly mother that I help. Also, a mentally ill brother in a home. So, it is going to be hard to leave the home. I will start out per diem, then maybe go into PT, to get benefits.

I take methotrexate and it really helps. I have been on prednisone off and on over the years.

Chloe'sinNYNow · Aug 22, 2007

You need to make sure that you eat healthy, little exercise, and very important to get proper amount of sleep. I am just speaking of my own experience. If I did not get enough of sleep, I would feel miserable the next day.

Oh...SLEEP? No wonder I haven't been able to kick this flare up of 3months. That's about how long I"ve been working towards NCLEX.

Sorry to hear bout your family. Sounds rough. And you sound amazing to be so strong about it. Prednisone has failed me this last time. Never completely obliterated the e.nodousm and worse ones followed.

I get freaked out when my feet swell on top of all else. Finding it hard to go to the gym these days since getting pains and bumps in my ankles and achilles area. Sneaks rub. I'm gonna look so funny. Can only work out the upper bod. Lower bod is looking bumpy flabby and gross. Upper bod is looking muscly and defined.

Methotrexate, huh?

iwanna · Aug 26, 2007

[sorry to hear bout your family. Sounds rough. And you sound amazing to be so strong about it. Prednisone has failed me this last time. Never completely obliterated the e.nodousm and worse ones followed.

I get freaked out when my feet swell on top of all else. Finding it hard to go to the gym these days since getting pains and bumps in my ankles and achilles area. Sneaks rub. I'm gonna look so funny. Can only work out the upper bod. Lower bod is looking bumpy flabby and gross. Upper bod is looking muscly and defined.

Methotrexate, huh?

Chloe, How are you doing? It sounds like that you need to control your sarcoid first. I get that you have no insurance. Could you possibly qualify for medicaid temporarily since you do have a medical condition? Or, perhaps your local hospital has a charity care program. I took that route before qualifying for Medicare. Cobra was more than my rent and the deductibles and co-pays weren't worth it. Under the charity care, all my dr. visits were covered and all hospital procedures. And, dr. gave me samples most of the time for my meds.

Oh, and methotrexate is a cancer drug also given to pts. with rheumatoid and various forms of arthritits. Without it, I have terrible joint pain. I was on prednisone for way too many years. I just weaned off of it last February. And, boy did the weight come off once I got off prednisone. That is one of the downsides of prednisone, unless you want to put on weight. Everytime I went on it, I would gain a bunch of weight. I have boxes of various sz. clothing. I will not get rid of my "fat clothing" because some day I may need to be on it again. But, I won't go down without a fight!! I begged my dr. to take me off of the pred.

Please let me know, if what I suggested are possible options for you.

LesMonsterRN, ADN, RN · Sep 4, 2007

I have sarcoid, too, but for as much as I've read on it, I never connected joint pain with it although right now I'm having some pretty intense hip pain. Makes perfect sense now that I think about it.

Chloe'sinNYNow · Sep 4, 2007

Good Morning Fellow Nurses!

seems like the e.nodosum on the lower extremeties is abating. Whew. Mildly deformed and flattened nodules have left behind only discoloration. That always seems to take its time going away. I still have bumps, don't get me wrong. But so very less severe than I had a month ago. To the layman's eye, it still looks awful, but I see so much improvement. And the pain is bearable!!!!

I Just didn't do prednisone this time. Still battling the awful acne I had from it last time. and it's no longer doing the full anti-inflammatory tricks it used to. Plus I'm uninsured now since I'm out of school and as yet unemployed. So the cost of seeing a doc at $150 a pop to get a $9 Rx that may or may not help my sx and only exasperate w/ side effects was a not-so-difficult choice.

Seems like I've always had chronic fatigue and as a reformed smoker (now been off the sticks for one year + almost 4 mos), it seems I've never had a great lung capacity. So I still get winded easily, and last CXR showed nothing.

So I still have my doubts about even having this disease. Especially each time I Google looking for validation. My sx are few, my demographics are in the minority; well I guess except for my age.

I wonder tho'...I was knocking myself into premature hot flashes by trying to coverup my limp when I walked into an interview. Is this something that could negatively affect my career?

I'm still unsure what I'm even dealing with. 3 separate docs in 2 diff states seem to think I have this. I'm just not sure. But what else could it be??????

nursedbm · Aug 6, 2009

I just figured out today that I am having a flare of sarcoidosis and the resulting e. nodosum. I am guessing it is stress since next Monday I start RN school. I have my LVN but went straight back to school without working as LVN. A lot of my old classmates are working nights as LVN and it is very hard on them and they are a lot younger than me (I will be 43 this month). I worry about my ability to work med surg right out of school and if I plan on getting further education like BSN and eventually my masters, does it really matter where I start? One of my old LVN classmates who just got her RN is working in a drug rehab place and she really likes it. How much are we really hurt if we don't start out med surg? I would hate to try it and fail. (Although I know if I don't try it, I will never know.) Any suggestions on anything - specializing, e. nodosum, sarcoidosis, etc. - would be greatly appreciated. I would have started a new thread but I couldn't figure out how!

nurseinpa · Oct 16, 2009

I have sarcoid as well and I'm 28 (diagnosed at 26). I didn't believe my diagnoises at first either since I didn't have any lung issues. I had an open lap and a lymph node biopsy - they were ruling out lymphoma- and they said the biopsy was consistant with extrapulmonary sarcoidosis. I get terrible joint pain and abdominal pain, fever and constant fatigue. I did prednisone for a long time which worked but also made me gain 40lbs and i swear I didn't sleep for months. Now I take Methotrexate and Neurontin and it seems to be stable (although I did get IV Solu-Medrol when it gets bad). I too had trouble trying to explain to employers why I miss so much work. I now work agency and its working out great. Not what I wanted to do but so far so good. I work 3 days a week, which ever days I want to work, and if I have a flair I dont work. Since Im not obligated to work a certain amount of shifts the agency doesnt care if I work or not. This is the only reason I'm able to continue to work as an RN. I honestly thought about giving it up and going back to school for something else. Glad I havent had to yet.