Hi, recently diagnosed

Discussion in 'Fibromyalgia Main Forum' started by ritatheresa, Dec 15, 2005.

  1. ritatheresa

    ritatheresa New Member

    Hi all, my name is Rita recently diagnosed with Fibro/CFIDS. Have had it for very long time. This has been such a nightmare to say the least.

    I have been complaining of horrible fatigue for years, was diagnosed with sleep apnea about a year and a half ago, given CPAP, found out I'm EXTREMELY claustrophobic, was so desperate I had the surgical procedure which they told me was a 50/50 chance for positive results. That was good enough odds for me. I was so DESPERATE. Well it didn't help.

    I'm a single mom of a 10 year old girl. I went back to school when she was 2 for my nursing degree while working full time as an LPN. I really thought things would be better for us.

    So here I am, I've been working as an RN for 5 years, I must say I LOVE being a nurse. However, I've been on a downward spiral for a long time now. Always getting in trouble for absences, lateness, late assignments.

    I came down with bronchitis and a really bad sinus infection about 2-3 months ago and that was when the symptoms got MUCH, MUCH worse. Pain like I've never experienced in my life.

    I have always had the brain fog but now it is SOOO much worse. I don't even feel human anymore (if that makes any sense).

    Basically I am terrified, I'm on a medical leave of abscence right now and now that I've had some time to TRY and get everything together I can not believe what a mess my life has become.

    I have been existing for so long, I can't even call it living. My poor daughter, what she's been through, I'm sad for her. I can really get down on myself.

    I am so sorry for this post being so long, Actually, I could go on and on. It is just such a miracle to finally understand what's been going on with me.

    My biggest fear is not even my health (sad but true), but how am I going to hold myself and my daughter down financially. I bought a home and now I will probably lose it. I'm only 34 and life should be beginning and it seems as if it's ending. Any feedback would be appreciated!!!
    Although it seems hopeless I have total faith that God will take care of us as he always has. I'm just really scared.
    God bless, Rita
  2. SleepySmurf

    SleepySmurf New Member

    I, too, am 34 and in healthcare. I also am in trouble at work.
    I'm an optometrist.

    The Dr's don't yet have a Dx for me. I suspect CFS.

    My biggest fear is losing my job. Patients have, for the past three weeks, complained that I'm rude. But you know what ... I wasn't intentionally being rude. I was trying to stay awake. I've been fighting falling asleep at work while examining people and the urge to sleep is so overwhelming that it must affect the way I present to people without my being aware of it. I'm frustrated because patients are mean, unforgiving and ruthless if they see their doctor is not paying 110% attention to them and their needs.

    I'm not trying to be rude, I SWEAR! I'm just trying to stay awake. I can't tell patients that, or they'd walk out and get their eyes examined by a doctor who was fully awake.

    I also have a contract and am self employed. My contract stipulates I work 24 hours a week. I have gotten so sick that I can't even do that. I'm afraid that if I go on medical leave of absence they'll fire me. They CAN simply cancel my contract and find another optometrist to take my place. I have no safety net. I'm afraid to go on leave.

    Yet, if I don't take a leave of absence, they'll probably fire me for all the complaints, which range from: "she's rude," to "she doesn't say anything" "She doesn't answer questions" "she seems in a hurry."

    I feel like I'm at war with my own body. I don't say anything because I am not verbally coordinated when I've had four hours of sleep in a week. This also explains my not answering questions well. Just two days ago, someone asked me to explain "Lazy eye" and "glaucoma," and I couldn't do it in a coherent sentence. I was having trouble just keeping my eyes open! I probably appeared drunk or intoxicated. The patient was LIVID and I gave them a refund. If I seem in a hurry, I'm probably just doing sloppy work because I can't coordinate my body movements on 4 hours of sleep in a week. And yeah .. you might be a little "snippety" if you couldn't sleep!

    The bottom line is this: when I'm fully awake and feeling good, there are zero complaints. Not one. When I feel ill, there are complaints.

    I'd like to see one of these "motivational speakers" who teach people customer service skill to come up with a solution to this problem. HA!

    The scary thing is ... I got complaints this week from people who I didn't even know were mad. I wasn't even aware of how I presented to them.

    I just don't know what I'm going to do. I'll probably take a leave of absence and PRAY the company doesn't cancel my contract. And yes ... it's illegal to cancel an employement contract due to illness ... but it happens anyway. They figure I won't by savvy enough to hire an attorney and sue them. This company has done this before to people, so yes, I am scared.

    I have no disability insurance, scant savings. Everything I had went into the business.

    So, Rita, I do know, to some extent, how you feel. It's a scary world out there.

    [This Message was Edited on 12/15/2005]
    [This Message was Edited on 12/15/2005]
  3. springrose22

    springrose22 New Member

    I am an R.N. also, so understand what you are going through, but I had to quit working in Feb. of 05 after trying to desperately plough my way through each day. It was a nightmare. I couldn't remember things, and was worried that I would do someone some harm, not to mention that I could barely put one foot ahead of the other. But, I found out that fighting my way through each finaly made me much worse, and I ended up bedbound or couchbound for 20 hours out of each day for 2 -3 months. I have improved slightly since then, and don't have to lie down so much any more, but I will never be able to go to work unless I start getting some treatment like is being offered at the FFC's. I have done a lot of research, and I believe they are on the right track for some treatment for this debilitating disease. This board is also great for info and support. Marie
  4. ritatheresa

    ritatheresa New Member

    Thank you everyone, I really do appreciate your support.

    I need to learn how to take care of myself. I can already see that my job is going to give me a hard time. I have one particular nurse calling from my job. She's trying to make it like she's really concerned. I know her interests are with the agency so I feel I need to be careful about what I say. Am I being paranoid?

    Does anybody have any suggestions how I should handle this. I do have Long Term Disability but that doesn't kick in for 6 months. Right now I do get a check from short term disability from my job but it pretty much covers groceries.

    I know my agency will do anything to get rid of me. It is just so sad that this disease is so misunderstood. It's crazy.

    I had made a promise to myself that if I ever couldn't give my patients what they deserve and need it would be time to reevaluate. I have gotten quite a few letters from patients commending me on the care I gave. Now I need to care for myself the way I did for them.

    The more I stress the worse I feel. I KNOW God will take care of me now as he always has, I need to just let him.

    Thanks again, looking forward to hearing from everyone, take care Rita
  5. Moonshyne

    Moonshyne New Member

    Bless you and I hope you find a support system from friends or family ...that may help you. My story, is much the same.
    As a single mom, I was working 2 jobs til I crashed and burned... I did lose my house, jobs, etc, etc...by the grace of God, a friend took my daughter & I in and I had to go on welfare til my disability kicked in which took almost 2 years til everything got worked out.

    We are finally on our own again, but it is a constant financial struggle, I don't get much on disability, plus I support my daughter & my grand-daughter.

    The stress is never-ending on many levels.. I wish I had some answers for you... but unfortunately until the reality of this disorder is actually confirmed and understood by the medical community... I fear no changes will be coming any time soon for us...

    Good luck and keep posting... it helps!