I'm 56 – Dr. says I file disability

[russellb]

I feel lost with no direction. I have been a college counselor for 30 years and love my work. I believe that I do something good each day. HMG is continual low and I will be receiveing my 6th transfusion in 12 months. Dr. strongly pressuring me to take disability. Loss of income scares me and I still have the energy to go to work, the mind and heart still wants to reach out to others. I still want to work, but making such a big change scares me. Platlets and WCC are at marginal levels so I am fairly stable now. I am facing the reality that some day I might have to make a big change. I am not sure if I am ready to accept it – now or later on. Any ideas what to do? I am not sure where the right road is!

[Kathryn]

Hey Russ… I was thinking about you last night and was wondering how you were doing. I was going to send you a message, but my life pulled me away from the computer…

I can understand your concern. Take it one step/one day at a time… It was a good idea to post, because the more people you talk to, the more info. you have to make the decision that is best for you….especially when the info. is from others who have been in or are in your similar position. I think that when the time is right, you will know what road to take. You obviously have a gift, so when the times does come, there should be other avenues that you can use to continue to reach out to others.

Russ, I am wishing you the best and sending positive thoughts your way. Hang in there and take good care.

Kathryn

Kathryn

[gemloyear]

Hi Russ, I do understand how you feel.My husband and I have worked all of our lives. it’s very hard to give up. Aside from coming in contact with people who have colds or flu is there any other reason your doc doesn’t want you to work? My husbands doc has told him to be careful to not get bumped or cut and to get to the ER if he should, so far so good. I think it’s more important to do something that makes you feel happy and worthwhile. Feeling lost and depressed is bad for anyones health. My husband is 75 and until recently, worked every day in a family business. He had to stop because of blood clots in his legs, that cleared up and now he has cellulitis in the same leg. you can be sure he’ll be back to work as soon as the leg is better. Right now he is feeling lost and useless because he can’t do anything. I think you know where the right road is, and you will make the right choice. When the time comes for a change you will have had plenty of time to plan for it, and will find something worthwhile to do that will make you happy.You are still a young guy with lots of years ahead of you , think about what your going to do for the next 20 years . Good luck with your choice.
Ellie

[John in GR]

Hi Russ,

In 2001 a doctor suggested that I quit work, go on disability, and have a SCT. I chose to go another direction and am still working.

If you feel fulfilled and are physically capable, why quit? I disagree w your doctor’s advice. You should give up your work when you are ready. Perhaps your doctor is concerned about risk of illness because of your interaction w many people. If you and your family are comfortable w that risk, then so be it. If you are not becoming ill frequently, then your resistance is apparently still functioning adequately.

On the other hand, you are 56 w a serious illness. I suggest you take time off when you can. Stop and smell the roses. Look for opportunities to use the skills you have developed to help people outside of the work context, so that when the time comes to move on you will have a bit of a transition in place.

John

[Suzanne]

Hi Russ, There is no easy answer to this. I went on disability when my white count was too low to be out in public safely. At that point I did not feel comfortable touching public door knobs or using public toilets or eating in restaurants. I saw my grandchildren out in the open air. All I know is that I was successful in not catching anything and found things at home to keep me busy. When things got a little better, I worked limited hours in the evening when I was not in contact with so many people and within the income guidelines to stay on disability. Now I have gone off disability and am headed back to work. However I did not go back to full time high pressure like before I got sick. I decided to keep some free time to smell the roses just in case. Do what feels best to stay healthy both mentally and physically. I truly believe avoiding stress & depression helps with this disease.

[Carl]

Russ,

I recommend you do what makes you happy. Having MDS-RA is something you must deal with but if being a college counsler is something you would like to keep doing, DO IT. Tell the Dr. to back off pressuring you to file for disability that you still feel good enough to work. You can always go on it later if you start feeling worse or the disease progresses to another stage.

I still work and enjoy doing what I do. It keeps me from thinking about this crummy disease that we have all of the time. I agree with John that you should take time off to do some things that you have been putting off and would like to do.

The Revilimid medication, by Celegene, should be approved this year and it may help you since you have the RA type of MDS.

Good luck and God Bless.

[frank]

i don’t know you need to be on disability or not, but for me, i am still working as full time, and doing babies sitting at night the past year, i don’t think i will apply the disablity until the day i am really sick and cannot work. My WBC is low, too, but with the drug i definitly can manage it to be safe for myself. the rule is don’t give-up.
i came back to work today after almost a month’s crasis, infection after the chemo and drug reaction almost kill me, but i think i can get back my foot and go to work today, i love it. hope you can do it same.
i think i will start my 2nd round vidaza soon after i get my strength back, i lost over 20 lbs for the last month, i need to feed myself well then.
i am not a success case in the forum, but a lot of people here were, just believe in it, you maybe the lucky one next, the diesease can be fought for, and you can be a winner.

Frank

[KP2112]

Hi Russ,

My advice is to get well and stable. Being off work for an extended period of time I think will be depressing and that could add negatively to your condition. Perhaps you can adjust your schedule to be flexible. I think it is important for MDS patients to be active in some way (to the extent they can). Do what makes you happy if you feel well enough to do so. The Dr. does not know how you feel. He/she is only reading numbers on a page.

Kind Regards,
Karen P.

[Neil]

Hi Russ,
It is difficult to give you a definitive answer since there are so many variations to MDS. The differences are significant.
Hopefully the following will give you some discussion points for your doc.
Is your doc a hematologist experienced in treating MDS? It is necessary you have a hemo on your team and see him/her regularly till you are comfortable.
Most patients with RA can be treated. Sometimes Procrit helps boost red cells. Aranesp is alo a possibility.
There are many many patients who get transfused every other week and lead very producrive lives. One example is a man who has had over 400 tx. He travelled to Russia on business between tx. Believe he is still working at 60-65.
Cheleation usually becomes necessary, but can be managed.
Generally a disability is appropriate when a patient is too fatigued to function. Is this the way you feel.
Typically RA patients do quite well and work around the tx and cheleation.
There are a number of other drugs that can be considered. Arsenic Trioxide, possibly Revlimid.
Have you tried Procrit? If your erythropoietin and iron levels are OK it might help.
It sure changed my life.
Neil

[russellb]

Neil:

Thank you for your gracious message. I have been on procrit and it has helped. I feel quite well, except for fatigue around 4 PM and then I rest aftr work. I am well able to keep up my counseling routine and look forward to going to work. So, I see no need to restict what makes me feel good. Seeing your age encouraged me because I see that I have some good years ahead of me. Iwill talk to the Dr. about the medication you mentioned. By problem now is that my Hemotologist/Oncologist has closed his practice to take a position at a local Medical School. His replacement is an Oncologist, but not a Hemo. So I am now in he position of considering numerous consultation appointments if I want to find another care provider. That has simply added to my frustration. But, I do feel better after you response and appreciate the time you took to write.

Sincerely,

Russ

[Suzanne]

Have you tried a center of excellence for MDS? If you like working then by all means do it. Now is definitely the time to do as much of what you want to do as you can.

[Author]

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