It has been a little bit since I have posted on here but I have just not feel too much up for anything. Not sure if I mentioned before but NS is suspecting Occipital Neuralgia and is talking possible injections (AHHHHHH). Anyone else deal with this?
Also, I have a large polyp in my sinus cavity that NS is wanting me to get checked out, even tho I told him I was NOT having surgery for it. The headaches I am having are not sinus related b/c I have dealt with this polyp my entire life and know how it feels when it gives me probs.
But, I have 3 appointments this week alone. MRI, ENT, and NS.
Now to my topic...I am in a funk and don't want to even get out of bed. I hurt constantly and on top of that I pulled a muscle or did something this weekend to my neck to where I can barely move it and it is killing me. I don't want to be at work b/c I sit here in agony all day long, but I can't completely afford to quit b/c they help pay my bills and provide me with continuiously rate increasing insurance. Do all of you work? And if you don't, please how do you make it financially and insurance wise. I don't honestly know how much longer I am going to last.
Thank you very much. My husband is disabled so that leaves me holding the bag. I had forgotten what I had named myself on here but boy does that fit anymore LOL
First Occipital Neuralgia is not pleasant & I am very sorry. The injections to my Major Occipital Nerves help tremendously. It honestly just feels like a bee sting, now if you or someone was watching it would look shocking as they gave you the injections but they are so worth it. Now Minor Occipital Nerve Blocks didn't do anything for me, but you have to have someone experienced giving you the injections. A plastic Surgeon came up with a mathematical equation they use so they can hit everyone Major Occipital Nerves the first time. My first one lasted 3.5 years. Some people's last forever. They never know how long the injections will last each person is different. I would recommend a NS or Pain Mgmt. specialist give you the injections.
Re: your neck. Have you seen a Pain Mgmt. Specialist? I have had nerve blocks and ablation treatments and take Tramadol & Klonopin and other medications as need when things are really bad & it helps my neck tremendously & I have had my whole c spine rebuilt & additional C Spine surgeries. I also use Arnica brand name Arnicare at Walgreens. It really does work. The Klonopin was developed as a muscle relaxer as was valium. I works better for me than baclofen and other muscle relaxers.
I do not work outside Ben's Friends I couldn't & tried after my extensive surgeries & extreme CM situation.
Do you have Long Term Disability Ins. through your employer? I haven't looked but if you are in the US you can apply for SSDI, but know if it is approved it is for less than what you are making now but offers Medicare benefits. If you would like I can talk to you about your options. Just please send me a private message.
Please just know you are not alone. We all understand all your concerns and most of us have been where you are now.
Also know John Stamler & I have been working with the SSA to develop a program with the Ticket to Work Program that allows Members to work while on SSD from home & in their communities and are working out the issues since we are National and each State has it's own Employment Networks it's kinda difficult. Plus the SSA is developing a pilot program for groups such as Ben's Friends.
Also, if they decide to do the injections it will be my NS doing them and he told me he would sedate me. I guess he could see the fear in my eyes lol
I haven't seen anyone about my neck yet, I just honestly cant find the time. I have 3 appointments this week alone. I hate running back and forth to this dr and this dr, I am sure you can all relate.
I definately feel your pain and frustration. I am a registered nurse and I tried to work as long as I could but it just got to the point that I was in so much pain that all I could do was sit at nurses station holding as still as possible and Praying for relief. Which was not fair to those I worked with so I was written out of work by my provider. I do have LTD but its after being out 90 consecutive days. My husband has Sarcoidosis on his liver and has been out of work for a while. We have exhausted all PTO and are dependent on God to provide. Our kids left college and work and have managed to keep cars from reposession and the utilities on. We have had to go to churches and charities for food and gas and the sad part is that the economy is so bad that the churches are strained and hurting. I wish I could tell you that I knew of a way to help you ...a way to help all of us. I will Pray and reach out and see what happens!!
Sorry to hear things have been so rough for you. Right now I am still pushing on, my things is I don't know how much longer I can hold out. I don't have LTD through work but we have been sticking a little back b/c my husband and I know it is inevitable. My children are 10 and 15 so all of their activities and running is what I am most worried about, they are the reason I will continue to push myself to the breaking point. Thank you for the prayers and I will keep you in mine definitely!
I am so sorry to hear how difficult things are right now. I also am a RN and just took a management position at my hospital. Because of this, I have been attending some training classes about employment law. I just want to remind everyone of your rights under the Americans with Disabilities Act. You have the right to ask your employer for reasonable modifications to make it easier to perform your work duties. If you can think of anything that would help, it doesn’t hurt to ask, from a flexible schedule to more breaks, to reassignment to a less physically demanding area. Most employers would probably rather help you than go through the expense and hassle if hiring and training someone new. Maybe even a short term leave to get your symptoms under control? Good luck, I hope you start feeling better soon!
I am kicking myself because I opted out on the Short Term Disability. So I used PTO and now I wait for my 12 weeks to pass so I can get some portion of my pay. I have been out under FMLA for two months.I am scheduled for decompression Thursday so hopefully I will see some relief. But my NS has already told me up front that I will not be allowed to return to duty until 3 months post op. But God will provide!
COmama said:
I am so sorry to hear how difficult things are right now. I also am a RN and just took a management position at my hospital. Because of this, I have been attending some training classes about employment law. I just want to remind everyone of your rights under the Americans with Disabilities Act. You have the right to ask your employer for reasonable modifications to make it easier to perform your work duties. If you can think of anything that would help, it doesn't hurt to ask, from a flexible schedule to more breaks, to reassignment to a less physically demanding area. Most employers would probably rather help you than go through the expense and hassle if hiring and training someone new. Maybe even a short term leave to get your symptoms under control? Good luck, I hope you start feeling better soon!
UGGG!! I am in exactly the same position. I am getting so much anxiety having to continue to work, but also so much anxiety at the thought of NOT working & needing to pay bills & survive. I have always been a hard worker & very independant. My husband has decided to leave me because I am .....NOT A FUN PERSON!!!! so much for sickness or health, better or worse. Not that I would be happy having to depend on him, BUT at least I would have had help getting through this nightmare. I am also determined to work till I drop, but its getting so bad, I fear I am going to drop real soon. Do not know what will become of me soon. I wish I had answers for us!!
I constantly worry about this situation. I am unable to work or fill out paperwork. Im married and put a lot on my spouse. I feel so bad being like this. Ive been really “sick” last couple weeks and now am on new meds. I cant get off the sofa. I sleep there thru the day and sleep shitty at night. My low back and tailbone have nerve pain shooting around when i stand and after im up. I am in so much pain i just want to die. If i had to be self reliant i would have already killed myself. I do have a comfortable life, unfortunatly i cant enjoy it. My doctor today said i probly didnt have Chiari. I got on here tonight wondering if i was hypochondriac, until i remembered who i am! And how much of a hard time i have with my symptoms. So i feel better just being on here. I need to go to acupuncture. Its so hard to type correctly even. I was upset earlier tonight and was yelling at my spouse, now im just calming in bed trying to realize how much i am loved and how much i love my spouse. I love my partner. I am so sad to be sick like this.
I personally am getting long term disability from my employer at a whopping 60% deduction. I am a single mother of three but honestly you make it work. I was scared to death to make the transition and I dont know now how I even managed to work in so m much pain. Good luck
Hello, I'm just seeing this thread now so pardon me for the late *bump* up, but lately I've been going through the exact same slump and was searching threads to read/see how others were dealing/have dealt with this. I'm a new diagnosis, was diagnosed this summer with Chiari 1, SM, Fibro on top of the other ailments I already had - PTSD, TMJ disorder. It's a full plate and then some.
But like you, I can't afford to lose my insurance. I'm single with no nearby family so it's just Me, Myself and I to make it all work. Financially, I had to cut down all my bills as much as I could while I was unemployed summer of 2012 and after I got a job I kept living at that standard of living, especially since my current job pays less than my old job did. I'm now in the process of downsizing to a smaller space to save even more money. My hope is to continuously minimize costs, pay down debt and build up savings so that should things truly get worse I have some sort of starting point. I am fortunate and very blessed to have a job where I can work from home a few days each week which is, I have to be honest, probably the true main reason why I'm still able to work.
How open would your job be to setting up a telework schedule? Would they be open to one day a week? How receptive is your boss? Some people might surprise you...but I can totally understand if you're hesitant to open up to colleagues about this.
You are not alone. We can empathize. ((internet hugs and best wishes))
We have started downsizing ourselves, and were doing fairly well doing so. I am trying to pay off as much debt (dr bills) as I possibly can so that when I talk to my employer, I can afford it. THEN, we get a surprise. My stepdaughter and her family move in with us (total of 6 extra ppl) from 800+ miles away. So, they are looking for jobs and housing right now. Until that happens I have the extra mouths to feed. I am at that point where I am ready to just pack up and run off to find a hole to crawl in.
I got my first set of injections (Occipital Block) Thursday, they haven't helped yet but I still have 2 rounds of those to go.
Well I don't mean to gripe so I will go. Thanks for the support!