Adults living with Thal, how do you support yourself?

I am curious as to how others here support themselves financially? Do you work a normal full-time job or do you seek any kind of government assistance, or both? I'm in a transitional period in my life right now, facing financial hardships as well as feeling physically and mentally lousy. I'm out of a job right now and I don't know whether to keep on applying for jobs while I'm feeling lousy or if I should temporarily file for disability. I'd feel a lot better about what to do from the responses here. Any feedback is much appreciated!

By the way, I think it would be great if there was a section on this forum that allows adults living with Thalassemia to discuss how they manage and enjoy their lives. This would especially help me and others as well because I don't know anyone locally who deals with Thal or anything related. What do you think?

-Alex

Alex,

Good suggestion. What I have done is I have "stickied" the post, so it will stay near the top of the Living with Thalassemia section, so it won't get lost among all the other threads.

I'm not sure if you're talking about people with thal major or minor, but I have thal minor and the fatigue makes it very hard to work a regular job. Right now I'm still living with my parents while I attend college, but I am working on starting up a blogging career so I can support myself from home. That way I don't get fired when I sleep through work or don't do well at my job because I can barely stay awake the whole day. I don't make much right now, especially since the fatigue makes it hard to motivate myself to work every day, but I think if I stick to it, I'll make enough to support myself within a couple of years.

I am a Thal Intermedia and I have been a software engineer for the last 11yrs. I am usually drained before the end of the day. I workout during my lunch break have two active kids to keep up with when I get home. I find caffeine gets me though the first half of the day pretty good, but in order to finish up the day I just have to stay moving. Whenever and whereever I stop is pretty much where I drop. On top of that I don't sleep well. Only 2-3 hours at a time before I wake up and make myself go back. I just had ACL reconstruction on my knee for an old college injury and right now I'm hoping it wasn't a mistake. Rehab is going ok, but I don't build muscle as fast as non Thal people so I may be in for a struggle. Soon after rehab is done I have to go to Puna, India for two weeks on buisness. I am so nervous about this trip. Never been away for that long and I'm hoping my Thal doesn't affect me in a bad way.

Bobby,

A bit of advice for Pune. Don't drink the water from a faucet and used bottled water for brushing your teeth. You will find some American chains like McDonalds and Subway, although to be honest, the only time I got sick in India was after eating some veggie food at McDonalds. The Indian food never gave me any problems, but be careful about eating foods prepared with water. It's best to ask if bottled water was used in the cooking. Bottled water is fairly cheap there, so the cost isn't a problem.

I hope your knee recovers well and soon Bobby.  Good luck with your India trip.  I'm amazed at all that you do - you are contending with thal very well!

Best of luck in India - I often worry about my son and whether I should take him there mostly due to medication we give him to suppress his immune system.  Hopefully one day I will be able to make the trip with him - he wants to go more than anything.

Please keep us posted!!

Sharmin

Hi Bobby
Good luck with your India trip. Being an Indian I do not want to project India in a negative way coz I love my country, but her are a few precautions I take for my children born and brought up in Saudi arabia every year when I visit India. Bottled water is a must but make sure you buy it in a super market or hotel, not on the roadside, railway stations, bus stations etc...Make sure you eat food that is piping hot and avoid all sauces and chutneys including salads especially if it contains raw onions and boiled potatoes. And of course frequent hand washing and you should be just fine. Indians are very friendly so you should have a great time.

Enjoy your trip Bobby (pictures ) & I wish you a speedy recovery!
Thank you for sharing your story. I too I am doing well so long as I do not stop moving.
@kitkat - I would like to come in touch with you. We share a lot, I think.

Thank you all for your recovery wishes and travel advice. I am looking forward to the trip more and more everyday. I've always wanted to visit and I will be sure to take your advice to heart. Please continue to add any other suggestions you may feel that will be helpful.

Dear Bobby,
All the best with your trip. I am from India and will stick with all that others have already suggested regarding safe water and food.
 
Meanwhile, I am including the contact information of a Doctor in Mumbai who specializes in Thalassemia. Mumbai and Pune are very close and chances are that you would be flying in and out of Mumbai. Anywyas so , we have personally met  this doctor on three occassions and found him to be good, compassionate as well as knowledgeable. He is very good with emails and responds quite fast.
Here are the contact details-
Dr Rashid H Merchant,501, Rangmahal, 5th floor,2 Mount Mary Road, Bandra (West), Mumbai, India, deandoc2000@hotmail.com.
He is with the Department of Pediatrics, Dr Balabhai Nanavati Hospital, Mumbai, India.
This is for 'just in case' situation.
 
Please look forward to the trip. You will have fun and see if you get time to do some touristy stuff. If yes, then try to visit "Lonavala-Khandala". They are enroute to Pune.

All the best
SK

Hi,

Would anyone know a good doctor (for Thalassemia) in Gurgaon, India?

Thanks
Kiya

Dear Kiya
I am afraid I do not know of any doctors in Gurgaon area who specialize in Thalassemia. However, I am listing 2 leading specialists from Delhi and Faridabad respectively. Hope this is useful.

1) Dr. V.K.Khanna's mobile No. 9810160171.
He is attached to Sir Gangaram Hospital Delhi.
Gangaram Hospital has a special ward devoted to Thalassemia.
Attached with the same hospital is Dr. Ratna Puri, who specializes in genetics. She is great and has counseled us on two occasions. I would strongly recommend her. You can perhaps get her phone number from the Hospital.
 
2) Dr. V.P. Chaudhary - 9811073904 ( Sun Flag hospital Faridad)

Hope this is useful.
SK

Thank you SK! I really appreciate the helpful information and I will be sure to carry it with me. I love how everyone here looks out for each other. I'm glad to say I know such a group. 

Thank you SK. we will surely try to meet up with docs you recommended.

Thanks
Kiya

I am new to this group and have found all the discussion very very informative. I work a full time job as an insurance agent which I have done for the last 15 years.  The last five years have been very stressful due to the work demands like traveling.  My co-workers would always make fun of me and hold it against me in the workplace because by 8pm in the evening I would be extremely exhausted and wiped out.  They would expect we to stay up half the night with them working on projects and I just couldn't do it.

My primary care doc just doesn't understand Thal and I realize I have to take my  health care into my own hands.  I have recently started taking B2 tablets and B12 injections.  I am looking for some more energy.  On the weekends I usually take a 2-3 hour nap in the afternoon if I want to stay up past 10pm.

I have noticed that people will often assume those with Thal are lazy- which is NOT the truth.  I recently changed jobs (same field) to an office job where I do not travel and have the stresses I had when I was traveling.

I have noticed that as I get older the effects of my Thal are more noticable.