Confused and lost!

Accepting the loss of a very important part of yourself can be as traumatizing as the prolonged illness you have endured. Perhaps the notion of returning to your career was part of your motivation to keep pushing forward. If so, it makes the loss something even more to grieve. 

 

I am retired (age 60), but have not worked full time since I was 30. You will be surprised at how fulfilling unpaid activities can be. Granted, I had young kids at home much of this time (huge time investment). However, once you arrive at the point where you regain your strength, you will find a new direction. Nothing wrong with being a great house husband, preparing fresh and healthy meals every day and keeping a neat and efficient household (yes, this is WORK!). Volunteering at the hospital can revolve around your own schedule, or how about at a local animal shelter? Don't forget us too. Lots of folks here need help. You get the point.

 

But, first be sure to cut yourself some slack so you can take the time you need to restore your vitality. It DOES get better!

 

Jan

Hang in there Eric.  

Eric, I am not familiar with the Canadian system. Is it like the US where you have like 500 hrs a year you could to 'trial' returning g to work before losing the LTD?  I totally hear what you are saying because my mind seems to parallel what you are going through.  I think Jan is right in that you will create a new valuable thing to contribute that can bring you fulfillment. You have to see who you are underneath -- and do what brings you joy. You like doing rad stuff, maybe you can volunteer in the department....I knew a doctor that did that here.  She worked one day a week pro bono, because she loved what she did but couldn't do a steady gig anymore. I get the socialization part big time...and I have no idea how you put yourself out there I just know you do.  I am sorry you are dealing with all this crap but I am glad you got approved.

Hi Eric! You may not remember me but you replied to my post this winter in the rant and rave section about not being able to accept my dream job.I was absolutely heartbroken over it. I too worked in the medical field at a children hospitals. My dream job was in a clinic returning to that hospital. I  understand how important it is to return to a job that you loved after everything else we have had to give up. I can so relate to what you are feeling. It is such a hard thing to lose something else that we love to do and we know that it is totally related to this #%$%# disease and the surgeries. I think you have been through such alot.   

As hard as it may be to decide to go on permanent disability, it is a financial safety net. It will allow you to heal your body for as long as your body needs it.  I will be 46 this fall too so I understand the loss is more than just the job you love, it feels like another part of you is being taken from you. I get it and feel for you because I know this is a bitter thing to decide. Your abd area has been through the wringer and coming from another healthcare person, I have a couple of questions for you to consider that I was asked- will your core muscles be able to withstand lifting some of the larger patients and will they withstand whatever happens during the struggles that happen when dealing with a combative patient? While I know others may say, sure, of course that will come back, you have been through alot and these are questions that only you will know the answer to for your unique situation and your body. I wish you well and want to thank you again for the support you gave me in your reply this winter. You cannot imagine how much it meant to me and I am sorry to hear that you have this difficult decision to make!

Volunteer in your community.  It's far more rewarding than a paid job.

 

Sue 

I had to stop working a few years av as well. I feel now that my health and quality of life was more important than the job. I was also in healthcare and found even going back after surgeries the stress was a lot for my body to handle. Sometimes it's not a choice but a reality of having to care for ourselves. We are all on a journey and the path ahead may be different and difficult to accept but also could prove to be better in the long run. All the best.

I'm receiving social security disability benefits and know what you mean.  I kept thinking I was going to get back to work and it didn't.  I haven't worked since I was 54. I filed for my LTD insurance around 3 months after my surgeries and it was approved back to the final UC flare from hell commenced.  I waited another year to file with the social security claim.  My LTD insurance isn't reduced by what I get from social security disability so no one was nudging me forward.  I actually lost 6 months of possible benefits as I waited so long to file. They recognized the same disability date and I receive one year of back benefits from the date I filed with them.  I didn't realize that would happen.

 

I miss working too.  I would much rather be working than be ill.  I also have other health problems, including fibromyalgia and chronic fatigue. Have you ever considered checking to see if there is something else causing your symptoms?  The way I see it is if I can go back to work eventually I will and then go off of disability benefits.

 

You might be able to help others by finding some volunteer work and see how you feel afterwards. I find that I can push myself a day or two and then end up bed/couch ridden for days after. 

 

I'm elated that your surgery was such a success!!!!!

Thanks everyone for you kind words and very helpful suggestions. As I've now had a few more days to take it all in, I think for now, I'll just focus on getting back my strength. Once that's done, and I'm still unable to work, I'd love to be able to volunteer at Mount Sinai Hospital to help others through their GI surgeries. It's something I know a lot about, and have a very strong desire to use what I've learned to help others, always makes me feel so good if I'm able to really help someone! Who knows, there may be a time when I'll be allowed to return to work, but I'll approach it with caution as with so many other issues, I never know what's going to happen next. Besides, before I can even consider returning, after speaking with my orthopaedic and rhumetologist surgeons, it's clear I really need to address the bone issues. I have severe carpal tunnel syndrome, very painful acetabular impingement on my right hip, and need to have both my knees scoped out from all the arthritic inflammation. It would be pointless going back to work, only to have to leave again to have these much needed five more surgeries (I've already had bilateral rotator cuff decompression surgeries aka had the ends of my clavicles cut off, and the joints scoped out). I had hoped they'd do both knees at the same time,mans same for my hands, but they told me they rarely do because it makes the recovery so much longer, makes sense I suppose. The more I think about it, the more I'm convinced that I should stay off until I've finished having all necessary surgeries (had my first round of GI surgeries in the early 90's, after five surgeries, I ended up with a J pouch). Starting in 2009 with my first rotator cuff decompression, up until now, I've had two bone and five GI surgeries, but thanks to several years in the early 90's of up to 85 mg of Prednisone/day, as I age (now 46), it's becoming too obvious just how much damage it did. If I can get through these next five surgeries (which, compared to my GI ones, should be a piece of cake, being only a hour or two long, as opposed to my typical 10 hour long GI surgeries), and they work, then, and only then, will I consider my return to work. Do do so is, after much thought, the best, and only way to proceed, especially considering typing is a big part of my job, and my hands are in agony after only a few minutes of typing on a keyboard (right now I'm using my iPad, using only two fingers to type), and I loose my grip on everything, combined with the considerable amount of pain when walking..well, I'm left with no choice. Honestly though, had Dr Cohen gave me the all clear to return to work when I saw him last week, I'd have done just that without considering the other surgeries that I need, so I suppose it's a good thing he wouldn't let me return. Now, after all these joint and bone surgeries done.....did I  mention my spine?, again because of prednisone induced horrendous arthritis and DDD (Degenerative Disc Disease) in my entire spine is eroding and causing a ton of pain some days, then other days nine at all. But I've seen my imaging, it's not pretty. The vertebrae and the dics's are eroding so badly, especially C1-C5, T2-T4, L4-L5, and L5-S1, that at some point within the next 10 years, if I don't allow them to do a fixation of my entire spine (aka, they'll attach two very long rods along my entire spine), I face, pain aside, the inability to walk. It's no wonder I've been so stressed, because honestly, up until the last week, I had put all this info in the back of my mind, and complately ignored it, but now, if I don't take action, I'll literally end up  totally disabled, no thank you!! Funny, but just with my past surgeries, I'm classified as disabled, I even have a disability handicapped parking permit for my car (I get so many dirty looks when I use it, they joys of having an invisible disability!). So, that's what I'm up against, good thing I'm not afraid of surgery!, only wish my veins reappeared, after so much, they've all but disappeared, so getting an IV, or doing blood work, means poke often painful poke, until I'm left black and blue. During my last surgery in May, my IV fell out. They called the IV nurse, but after four tries (and those IV needles hurt like hell!), she gave up, and went to get two more nurses to help her. I swear to god, it was like a vampire orgy, and I was the main course! My hubby Freddy walked into my room to find three nurses all poking me at the same time, and blood running down both my arms, and me, screaming in pain (it really hurts when all three start digging with the needles desperate to find a vein.). Finally, after 30 minutes, success, on my foot! Seriously, it's the only time I'd ever had a foot IV, didn't even know it was possible! Anyways, thanks again for you kind, helpful words, I'll keep everyone posted, if you're on my Facebook, I'll update there first, cheers all!

 

Eric 

 

PS - I think my new goal in life will be to get into the Guiness Records as the person with the most missing body parts and still alive! I'm well on my way, so far, I'm missing my tonsils, all four wisdom teeth, part of my tongue (had a beguine tumour removed last year), over an inch of bone on my distal clavicles, my rectum, entire colon, and most of my small bowel (I have only 7' of intestine left), and all my hair (wahhhhh ����) lol!!

Prednisone is a devil drug. We all can attest to that!  I love your attitude!  You are a positive guy and when I get down in the dumps I need to remember your perseverance.  I don't think I've ever heard of a failed ileostomy!  I hope you are finally done with GI surgeries.  I think you forgot that you have had your appendix out too  I'm assuming it went with your colon like mine did.  

 

Please keep us updated.  I am one of your fans                                                                                                                                                                                                                                                                                                                                        

 

 

I think Kathy is still ahead of you, leading the pack with the least amount organs in her body!

 

Sue