View Full Version : have lupus, suffering alone for many years,

03-28-2008, 12:10 PM
Please guide me, im scared...

i was sick so much, and didn't know why. when i found out it was SLE, i was told i had to stop working, but that couldn't happen. my student's loan found out i had sle, then canceled that years tuition. when the university got that info, i was unable to complete my studies. i was in no way able to cover the now due expenses. there were times i had three jobs @ a time.

anyways i spent 4 years in college, but no degree to show, cause i have never been able to present the balance i owe. since then i have bounced around jobs as my employers get frustrated trying to accommodate me. i have now officially been unemployed for sum 4 yrs now. i tried working in media/ entertainment during this time, as i felt is was flexible. but deadlines are deadlines, and i cant keep up sometimes. within the past year i have been hospitalized so many times, my depression and stress is getting the best of me.

i rarely have a good meal. the few dollars i earn barely make it to the bills, i have had evictions, power disconnections, water disconnections, terminations, and have just been ignored overall. it hurts a lot. i have very few friends, and they do try to help, but i can keep begging for money to get by anymore. the past two months i have earned zero dollars, and have to find somewhere to live by the end of April. without a proper steady income, i am clueless, but i cant go ahead with either, i dnt want to hurt my friends, but they cant help anymore, and i have been such a pressure to them. most of my time is spent in pain, vomiting, i mean the list is extensive. just in the past month i been to the hospital ER for severe flares 3 times.

when my period comes around, its even worse, you cant even touch me. my skin is sore, im vomiting the lining of my stomach, and just in soo much pain. taking pain killers is almost pointless, because i have such horrible abdomen cramps, and vomit so often.i was also diagnosed with ulcerative colitis. recently have had such severe swelling in my chest, i have trouble breathing, eating talking. in addition, i have severe loss of short term memory. it actually comes and goes. a CT scan showed i have a brain atrophy, im still trying to understand what tht is. cant express how terrified i am. but my memory loss affects me in my day to day activities, and in my work.

please guide me, i don't want to go, i think. the people around me just say im looking for attention, im lazy, i need to get over it... or it cant be as bad as i say it is. i have no idea what to do anymore.

03-28-2008, 01:35 PM
Hi Rachie

I'm so sorry to hear the pain you are suffering. I am not familier with what is available in Jamaica. Perhaps Saysusie will be able to assist with some information.

03-28-2008, 02:38 PM
Hi Rachie,

If anyone can help guide you, I believe it's the people here. You will not be ignored here. There are some very knowledgable caring people who frequent this site. I understand your thoughts of suicide all too well. I would ask you to go to the part of the forum called "Lauri's Lounge", and read my story. It's called "A reason to live". I wish I could offer you more. Please know that you are not alone, and there are people who care. Hang in there Rachie.

03-28-2008, 07:45 PM
Hi Rachie;
Let me say that it truly breaks my heart to hear someone so young say that they think that they would be better if they were no longer alive. I am not patronizing you, it just brings back so many memories of my daughter's suffering and her thinking that only her death would put an end to it. My daughter did die, and let me tell you...that was the beginning of my suffering! It was the beginning of suffering for every member of her family - immediate and distant! AND...in the end, my daughter fought for her life. In the end, she DID NOT want to die!
We do not know what is beyond this life, other than what our faith tells us. But I will never believe that we are brought on this journey of life only to be abandoned! Something brought you here, to us and we WILL NOT abandon you.
There is a Lupus Foundation in Jamaica. Here is the information:
Lupus Foundation of Jamaica Unit 5a 30 Red Hills Road Kingston 10, Jamaica West Indies
Fax: 876 926 3982
Email: lupus_foundationja@yahoo.com

Have you contacted your National Health Insurance? I understand that it is compulsory insurance, especially for in-patient care and medication and their focus is on people with chronic diseases (like Lupus). Perhaps, if they are unable to assist you, they can refer you to an organization to help you with medical costs ect.
Does Lupus qualify as a disability in Jamaica? If so, you might want to contact The National Vocational Rehabilitation Services for Persons with Disabilities.
The NPEP (National Poverty Eradication Program) has program that
specifically meet the needs of women suffering from poverty. Among them are:
* The Food Stamp Programme which not only caters to women living in poverty generally, but also has a specific component dedicated to providing nutritional assistance to lactating mothers.
* The Prime Minister's Special Indigent Housing Program (a short term project aimed at building or repairing housing solutions for indigent persons. The selection criteria for this project was deliberately constructed to ensure that the it placed an emphasis on meeting the housing needs of indigent females, especially those with dependents. This emphasis has been kept for the second phase of the project currently underway.
* The Women's Centre of Jamaica Foundation.
* The Bureau of Women's Affairs whose objective is to develop and implement programs to reduce poverty among women as it relates to the NPEP and international conventions. This is to be achieved through:

promoting measures to integrate women living in poverty into productive employment;

ensuring that national poverty eradication strategies have women as a priority group;

ensuring that women participate in formulating, implementing and appraising policies, programmes and projects aimed at poverty eradication;

ensuring that gender and age sensitive qualitative and quantitative data are collected to inform the poverty eradication effort.

Here is the contact information for NPEP:
Program Coordinating and Monitoring Unit (PCMU)
Office of the Prime Minister
1 Devon Road
Kingston 10
Tel. # (876) 927-9941-3 ext. 2135 or 2190
Fax # (876) 906-1244
Acting Director - Mrs. Lolita Knibb-Phillips

Also, are you a member of a church? If so, contact your church to see what types of services they offer (food, housing, etc.). Contact some of the organizations that I have listed. Let us know if they are able to help and how they've helped.
In the meantime, come here to us whenever you are feeling lonely or sad. We are always here to help you in any way that we can. You are truly important in this world and to this world!

Peace and Blessings

03-29-2008, 01:04 AM


YOU ARE THE BOMB girlie...I knew you'ld pull a rabbit out of your hat! You are such a great resourse! hugsssss

sick n tired
03-29-2008, 07:08 AM
Hey Rachie,

Your pain is so vivid. I am so sorry to hear that you are hurting this much.

You have found the right place as wasa evidenced by Saysusie's informative message above.

Welcome to this forum family.


03-29-2008, 09:34 AM

You are an absolute wealth of good information. Wow, you are good!

03-29-2008, 12:38 PM
it felt so weird having someone OFFER help, suggestions, love, and concern, as opposed to just saying it will be better tomorrow, when you yourself arnt so convinced.

I cried as i read because i have never had communication with someone with lupus, even though this is cyberspace. ive always figured, my whole life ive been cursed. i wish i could start it over and change what i did wrong, but i dnt even know what that was.

its just been such a struggle. but it sure feels great for a change knowing that someone really does understand. its such a weird feeling, not one im tooo used to.

Saysusie, oh my goodniss, i dnt even know how u came up with all that. seriously. there have been many days, just since this week i have laid in my bed with my phone and telephone directory trying to figure out who to call for help. i wanted a helpline or anything, a number for anyone that could help me find a way.. but came out with nothing.

to the best of my knowledge the lupus foundation isnt thriving here, they have meetings like every several months, but then i dnt know too much, plus no has been answering the phones there. im not sure

but first thing Monday, i will look up the other options you provided. i do hope someone in my own country cares.

i dnt have any form of insurance. never been able to get it on my own, too expensive, ill start, but stop paying in after a while. since i dnt reaaly work full time, i dnt have employee packages, nor spouse packages, without a spouse. i just have my constant pleading for help to get by. all ive ever needed is just abreak

03-31-2008, 06:05 PM
NEVER GIVE UP. NEVER. Your fight is our fight. You are not alone when you are here.


P.S. - Saysusie, you are a blessing. Truly.

04-01-2008, 08:19 AM
Thank you for your support and many, many thanks to all of you for what you offer to others here on this site! Again.....Thank You :lol:

Please let me know what you are able to find out from these resources and if anyone is able to help you. Remember, we are here for you and will do all that we can to help in any way that we can.

Peace and Blessings