Thalassemia Patients and Friends
Discussion Forums => Living with Thalassemia => Topic started by: whitephoenix on June 02, 2011, 07:51:40 PM
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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
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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.
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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.
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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.
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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.
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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
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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.
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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.
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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.
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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
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Hi,
Would anyone know a good doctor (for Thalassemia) in Gurgaon, India?
Thanks
Kiya
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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
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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. :hugfriend
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Thank you SK. we will surely try to meet up with docs you recommended.
Thanks
Kiya
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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.
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Get you vitamin D level checked, as deficiency is very common and it adds to the tiredness of thal minor. A minimum level of 35 should be your goal. I also recommend a B complex. This can be in addition to the B vitamins you are already taking, as B vitamins are water soluble and need to be regularly replaced.
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Hello!
I'm 29, I have thal major and I support myself just working. Either way, I asked for a disability % a year ago because in Spain when you have the disability, your enterprise receive some money from the government to employ you. This gives them a compensation for any possible disadvantage due to having a disabled person working with them. Nowadays, I'm still waiting for the appointment for the disability.
However, as I was saying, I have been working full time and without the disability for 8 years and everything has been ok. I looked for a job that let me go to the hospital out of working hours so I started working in a call centre. I work from 15h to 22h and some Saturdays so I have all the mornings to go to hospital.
Hope you all have the best of lucks finding a job.
Kisses,
Laura.
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Hi :)
I work full time in a busy gov't office. Ive always been a hard worker and feel like I have to put in twice as much effort as a non-Thal to reach the same results. I wake up tired, ignore it as much as I can during the day, to the point where I collapse or feel sick. Doesn't serve my health any, but I don't feel bad about my contribution to the team efforts. Fortunately I have a great boss who seems to have a good understanding of my situation and a great team who supports me when I feel overwhelmed. I carpool to work, always someone else driving, often feel sick on the way and have to take a few mins to recover when I get there.
I go to sleep between 8-9pm and wake up at 5:30 (to be out of the house by 7 and come bk home at 5:30) low quality sleep with trouble balancing my body temp and waking up often during the night too. Usually can fall asleep fast again but not always. Train blowing it's horn at night nearby doesn't help either.
I used to have my own business - holistic practice including energy work, crystal therapy, meditation and so on. Unfortunately when it stopped being enough to support myself I had to closely down and look for something else, but all that time it was running and I had time to rest, meditate, use my crystals regularly and maintain an overall healthier lifestyle (as in just giving my body time to recover) I barely ever got sick, felt exhausted, wasn't getting dizzy as often and even brought down my ferritin and up my hemoglobin. (my ferritin is now within limits but at the lower level, so I'm now taking a supplement to balance that out.)
However, as soon as my body didn't have a chance to rest much anymore and I didn't have time for regular crystal auto-therapy, fatigue and all the rest of my Thal minor symptoms came back with a vengeance. I've had a whole buch of tests done recently and all came back clear, which means Thal + stress are the culprits.
I'm fairly certain B-Thal minor wouldn't be considered significant enough to qualify for disability here (BC, Canada), and even so, the amount wouldn't be enough to live on. So I have to keep working until my creative mind finds a better solution to this issue.
Blessings to all :)
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Andy,
You are right - I notice a lot of change in lil A when I give him B complex.
Sharmin
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I am thal major 26 working as a financial analyst in Riyadh Saudi Arabia and belong to Lahore Pakistan. My parents brought me up and supported me till my MBA. Now that I am on job I contribute to the family income/expenses as usually any normal does in our society. Just yesterday I passed CIA part 1 exam from my own pocket :) I have a fire inside me to grow and excel and for that I am studying mroe and more. I am not a geek but rather a person who enjoys a lot, is very very and always romantic ;) and always hungry and on for trying tasty food and wanna see and travel the whole world and become a BIOLLIONAIRE ! ;) yeah thats what my small ambitions incomplete list looks like. Lets hope for the best.
Please when anyone introduces themselve plz point out whether its only thal or its thal major. cuz thal majors are worst case scenarios always and other thals may or may not go through those hardships that thal majors experience.
Now I am making future plans of establishing business, do Phd from United States and one day be on top on Forbes richest list ;) :rotfl
Atleast I have my dreams ... and no one can take them away from me ... :'(
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Congrats on the exam, Waleed. I've known you since you were a teenager and have never seen you allow thal to get in the way of your ambitions and development. :thumbsup
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Andy its actually thalpals who really keep me UP . When I compare myself with men like you with all those efforts for thals I feel to have wasted my entire life and thats what pushes me to do something/
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I am a Thal Major as well, for those who don't know and 17 currently. With God's grace, my parents are having jobs and financially I have been very good & blessed that I get my treatment done very nicely.
Though I want to contribute something from my side. I don't find myself a person working in an office for full 8-10 hours having Diabetes & other complications. So at the age of 15, I made a plan to self employ myself online as I love my computer, internet and coding (very much).
That way, I came into business of forums & I became webmaster. Now I run 2 or 3 websites for now and make some earnings from it. My future scale earnings are planned to be big with opening more forums and working hard over it. Who doesn't love this job? Sitting right away in his room in front of PC and being boss of own? Of course, as a life of webmaster, I too face problems like websites being attacked due to being famous, spending all day in it sometimes, but hey, its my current job & future business, so why shouldn't I focus? :)
-Pratik.
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I am a Thal Major as well, for those who don't know and 17 currently. With God's grace, my parents are having jobs and financially I have been very good & blessed that I get my treatment done very nicely.
Though I want to contribute something from my side. I don't find myself a person working in an office for full 8-10 hours having Diabetes & other complications. So at the age of 15, I made a plan to self employ myself online as I love my computer, internet and coding (very much).
That way, I came into business of forums & I became webmaster. Now I run 2 or 3 websites for now and make some earnings from it. My future scale earnings are planned to be big with opening more forums and working hard over it. Who doesn't love this job? Sitting right away in his room in front of PC and being boss of own? Of course, as a life of webmaster, I too face problems like websites being attacked due to being famous, spending all day in it sometimes, but hey, its my current job & future business, so why shouldn't I focus? :)
-Pratik.
Nice approach of being self employed, my one friend is networking expert doing job full time since last many year.
I am facing same problems as described by you and not having strength to work full time in job. you predict early regarding being self employed and it's correct.
Sometimes i also wonder that if i get working at home that would be great for me and why i don't choose BCA instead of CA?
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I am a Thal Major as well, for those who don't know and 17 currently. With God's grace, my parents are having jobs and financially I have been very good & blessed that I get my treatment done very nicely.
Though I want to contribute something from my side. I don't find myself a person working in an office for full 8-10 hours having Diabetes & other complications. So at the age of 15, I made a plan to self employ myself online as I love my computer, internet and coding (very much).
That way, I came into business of forums & I became webmaster. Now I run 2 or 3 websites for now and make some earnings from it. My future scale earnings are planned to be big with opening more forums and working hard over it. Who doesn't love this job? Sitting right away in his room in front of PC and being boss of own? Of course, as a life of webmaster, I too face problems like websites being attacked due to being famous, spending all day in it sometimes, but hey, its my current job & future business, so why shouldn't I focus? :)
-Pratik.
What is the name of the sites run by you? i want to visit it. plz provide the links.
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Hi Dharmesh, its not necessary that you chose CA and not Computer related field. You can expand anytime. You don't necessarily have to be in computer field for working over it, but if you find interest in it, you should start learning online, there are loads of articles & tutorials on internet. I choose this because since my childhood, I loved to be with PC and mess around with all these things. If I would be having interest in CA (Chartered Accountant, for those who don't know what CA is.), then I would have chosen it happily & expand in it. :)
Btw, I am doing my diploma in computer engineering, currently.
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Hi Dharmesh, its not necessary that you chose CA and not Computer related field. You can expand anytime. You don't necessarily have to be in computer field for working over it, but if you find interest in it, you should start learning online, there are loads of articles & tutorials on internet. I choose this because since my childhood, I loved to be with PC and mess around with all these things. If I would be having interest in CA (Chartered Accountant, for those who don't know what CA is.), then I would have chosen it happily & expand in it. :)
Btw, I am doing my diploma in computer engineering, currently.
Hi Pratik,
It is not such like that i don't like CA but infact i really luv CA. I am holding Accounting Technician Certificate given by ICAI. but at this part of time am not able to work continuously like normal person, so sometime i thought that if i was doing some computer course then i might got some computer job work which can be done at home with my convenience and comfortness. Because this course and professional career is requiring much hardwork than any other field and in addition you need to visit client's office in the city or outside the city for audit or accounts . that is much difficult.
oh yeah , :thumbsup All The Best for your computer engineering course.
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I work full time, and my job requires me to be on call at night. I am thal minor, and my job is physical. When I am having a dip in how I am feeling, it is really hard to get through the day but I force myself and sometimes resort to lunch time naps. Luckily, I have sick days, and short term disability so I was able to take time off when I was really sick this past July (blood transfusion and iron infusions). I am working towards getting more education so if I feel like I cant do such a physical job anymore, I will have options.
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Hi all,
I am Debadatta. I am a software engineer. Basically I am working as a web developer. Working as a web developer I don't feel any fatigue. I regularly come office to work. I have been working 3+ years in this field.
But I am worry about, I am little bit less communicative than others who are working with me. :(
God Bless You, All :)
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I just recently found out that I have Beta Thalassemia as a kid and was born with it. I haven't got my labs in front of me just a voicemail from my doctor. My red blood count levels were high @ 7.12 (range: 4.2-5.8) and my doctor ran ferritin test along with a whole bunch of other ones which came back fine. I have food allergies to Wheat, Soy, Walnut, Peanut, Shrimp, Corn and sesame (I have ate all those forever and just found out I have sensitivity). My symptoms are fatigue, abdomen bloating / nausea, insomnia and shortness of breath.
I have been working since the age of 16 and always knew something was not right and why I would get tired easily. I did good for my self without ever knowing I had beta thalassemia until the age of 28. I lived all over the world, hold 3 citizenships, 2 degrees (finance & economics) and work at a fortune top 50 investment bank.
I am not worried about my self and very thankful for what god has given me. I will live with what ever is thrown my way and accept the fact that one day I must return back to my creator. I worry about my son and possibly my future kids we might have. I am sure I am a minor and I don't think my wife is thalassemia since my son is 3 yrs old and show no signs. If anything he is probably a minor as well.
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Have you had your vitamin D level tested, also? Most find they are deficient and correcting the level can decrease tiredness and fatigue, while improving the overall health.
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Have you had your vitamin D level tested, also? Most find they are deficient and correcting the level can decrease tiredness and fatigue, while improving the overall health.
I am pretty sure my vitamin levels are bad and malabsorption (weight loss of 8%-9%) would agree with this. I have to spell it out for my doctors and they never listen. I asked my internel medicine to check my vitamin levels and he was like not necessary. I was so angry and wanted to walk out right then and there. I went to GI specialist and he was the one who diagnosed beta thalassemia after run a bunch of test and ruling out iron anemia. I want either one to run vitamin / mineral test so I can get a good idea. Tiredness and fatigue is not at the forefront of my symptoms but more with abdomen, nausea, distended stomach belly (could be food sensitivity which I just found out).
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Malabsorption of vitamins can be related to vitamin D level. For example, when D is sufficient, 30% of calcium will be absorbed. When deficient, only 10% will be absorbed. You may also want to check out your gluten tolerance because of your stomach issues.
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I am a software developer. I work from anywhere basically and earn a decent money. I want to work from home but its difficult if you dont have the environment. Not just for thal it true for any home office.
I personally feel lucky to have decided to stay in software development. I am very good at it. Even though my county Bangladesh has very poor job opportunities for this field the global opportunities makes up for it. I would personally recommend such. It also helps to cope with the health problems.
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Hello all
Very interesting histories here. I think all of us are brave and really not lazy !!!!!
Looking back and thinking in all my childhood and bumps around teen years in Brazil I see that if I was in the US probably I would have my thalassemia minor figured out . I suffered with syncope, dizziness,low blood ,pressure, short of breaf ,chest pain arhytmia ,anemia , headache...weakness syncope inside an Olympic swimming pool... Wow it's is a lot ! At age 18 I decided to get in show busy but the travels and hours imputed in walking and transportation to the casting calls soon started to give their tol on me .at that time I didn't really think that could be something related to my health . While being a model I remember things like being very pale ,falling on the cat walk and a photographer requiring from me that I not eat before a photo shoot because my stomach was not flat ( however I have not eaten nothing) ...at the same time I wanted to pursue a Physical Education University ( 20 to 22years old) I couldn't keep up with the full time studies ,commute , and stress . So I decided to just work since I was not able to work and go to school. Once I couldn't do much with my career either I started to work as customer service for a big bank in Brazil .I was a part timer and worker siiting down but I had my episodes of weakness for no reason and syncope between taking a break and going back to work. After 10'years That I got married and have kids I went back to the workforce I'm on my 4th year In a demanding job in security .the stress and more hours are getting on me again I needed to go back to part time
Right now my husband has been worry and maybe want me to quit my job.im trying to cut back everything I can ...my naturopathic doctor also agrees with my husband ...I know I tried to use a lot of hats ..but I keep thinking that is my job that gives me health insurance that covers my thal doc...has been difficult these days
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Hello all
I m Taslima,23 yrs old. In recent i found that having my thal intermidiate. I m worriod abt my weight is 43.5 kgs(5'3"). How wd gain my weight bcz it is under weight. Now also i used to take hydraxeurea and folic acid daily from 1 mnths. I also want to knw that there is any chance to surgery the spleen bcz it is quite large and the future of diposition of ferretin. Pls also suggst diate for gaining my weight.
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Thank you SK. we will surely try to meet up with docs you recommended.
Thanks
Kiya
Hello , I suggest you to once Visit Dr. Vijay Ramannan in pune before visting Dr. V.K Khanna..I Visited once there for my son..
Discouraging remarks from Dr. V.K Khanna from that time I with my son visited Dr. Vijay Ramannan.. Very good doctor..i personally feel.
BR//
Nitin
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I am new to the group, Hi! I lived with thal. I used to fall asleep all the time and still do if I sit down long enough. I do not know how I got through sometimes. I work 40 plus hours and make time for learned that I need to take a time out. I recently had to have iron transfusions, and I do not understand how it all happened. That was scary for me. I keep asking the Doctors if my thyroid and the anemia are connected and I do not get an answer. Funny !
I feel that if you take one day at a time even if you have to go on disability.
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IF,
I read you bio and am concerned that you are still given iron infusions. A history of iron toxicity (which may be a possible answer to what damaged your thyroid), would suggest you should not be given iron. Because you have had toxicity in the past, is there any possibility that you could get insurance to cover an MRI scan of your liver to look for iron load? I have heard from several thal minors over the past year who suffered organ damage from long term iron. I really think an MRI is the only way you can know if you have stored iron. If an MRI was to show an iron load, your treatment would be very different. I don't think that with your history considered, you can count on normal testing for ferritin to tell you if there is iron stored in your organs. Stored iron often does not show up in ferritin results, as is the case with non-transfusing intermedia thals, who absorb far too much iron from the diet (minors will also experience some of this if their Hb drops below the 9.5-10 range). Quite often, the liver will be carrying an iron load that does not correspond with the ferritin at all.
In general, thal minors will benefit more from folate and B12 than they will from iron and often the iron is a negative.