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JHJISSICK
09-15-2009, 09:13 PM
Hello, my name is Jeanette, and this is my story. I was told I may have Lupus when I was pregnant 17 years ago because I had a false-positive syphilis test. I blew it off because they said not to worry about it. True to Lupus my daughter was born very premature. Over the years I became very sick and ached all over like crazy. I brought up the possible Lupus Diagnosis about the 3rd time on seeing Doctors for it and they pretty much blew that off. However 1 Doctor did do some tests, and said I didn't have enough wrong for a diagnosis. By the time I was 33 I was in such bad shape, I was positive I had it, went to see a specialist, and of course was then diagnosed with not only SLE, but over the years a host of secondary Autoimmune Diseases. I will name just a few: Hypothyroidism, Antiphospholipid Antibody/Syndrome, Raynauds, Fibromyalgia, Sjogrens, Autoimmune Hemolytic Syndrome, Chronic Dehydration(which I have to transfuse a bag of saline with extra potassium and vitamins in daily through a Hickman, along with a constant running CAD pump with Dilaudid in for pain) Myopathy, neuropathy, COPD, Myositis, CNS Involvement, and I left out 9 others. I have to take Blood thinners due to a Portal Vein Thrombosis that I almost died from. I was on a vent last year because I bled out due to my INR being 15. I wish so badly that I knew I had it all along, so I could have enjoyed my remission periods!! Is there anyone on this sight who can no longer walk more than a few steps without being in a wheelchair, or who is sick everyday of their life, just has better days of "being sick" than others? I can't find anyone like myself to talk to, and am becoming depressed because of it. I have a "great" support system, but would love to find someone who "really" understands what its like to be sick everyday? To have to fight with themselves wether or not to sign that DNR form? I have been in Hospice and graduated. I look forward to this new drug being released, but so struggle every day. So, Just wondering, is there anyone out there just like me???:unsure:

mountaindreamer
09-16-2009, 05:35 AM
hi jeannette,welcome to a family where you can share stories of common daily struggles with lupus. you will find so many people here who have various experiences with the drs., with family and friends, with daily lives, and with this beastly disease. you have really faced so many devastating and frightening results of life with lupus, and i hope that things will level out for you and hopefully that you will enjoy some time of remission.Your question about walking....i have not had to start using a wheelchair yet, but i struggle with walking for very long. When i go to the grocery store, i use the cart to help me walk....i use a cane when my pain is bad, and when necessary, i will use the motorized cars at the stores for shopping. I know of a couple of members who recently had to start using wheelchairs, and i hope they will be along to talk with you about this.thank you for your question about DNR. I struggled for a long time about exactly how to complete this form. I finally did sign it, but i continue to have questions. My children are grown, so i don't have the concerns about the care of young children, but, it is still a very difficult decision. There is a part of me that wants them to just let me go with no efforts to revive, but I have never been a quitter, and it is difficult for me to give up. However, the overwhelming destruction of lupus makes me question the value of my life.....it is sad, but this is a reality decision that we must make.Please excuse the format of this post....i am having trouble with my abiblity to post on the forum, and (for some reason), my new paragraph commands are not working....all of my sentences are just running together.

nasalady
09-19-2009, 11:39 PM
Is there anyone on this sight who can no longer walk more than a few steps without being in a wheelchair, or who is sick everyday of their life, just has better days of "being sick" than others? I can't find anyone like myself to talk to, and am becoming depressed because of it. I have a "great" support system, but would love to find someone who "really" understands what its like to be sick everyday? To have to fight with themselves wether or not to sign that DNR form? I have been in Hospice and graduated. I look forward to this new drug being released, but so struggle every day. So, Just wondering, is there anyone out there just like me???:unsure:

Dear Jeanette,

You and I do have some things in common, I think. And I'm so sorry to hear what you've been going through!

I'm brand new to this site. I guess this is my introduction!

I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Sjogren's Syndrome, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia. :worried:

I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job. But I don't know how long I can keep it up! I'm so stressed out right now I don't know what to do anymore! I too need to find someone who understands what it's like to have SO MANY %$#&@* autoimmune diseases that you feel like a freak who should be in a medical research study!

I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

Two of my aunts died from complications of lupus. One of my adult daughters has lupus too.

Now I think I have lupus, and it scares me....

JoAnn

Angel Oliver
09-20-2009, 07:27 AM
Hi Jeanette,

Ive posted on the other thread as i missed this one,sorry.Hope you feel better knowing when you log in you are not alone and members can identify with you,in some way.I hope you know we all care.Catch up with you soon.

love Amandaxxxxxx

rob
09-20-2009, 08:38 AM
Dear Jeanette,

You and I do have some things in common, I think. And I'm so sorry to hear what you've been going through!

I'm brand new to this site. I guess this is my introduction!

I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Sjogren's Syndrome, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia. :worried:

I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job. But I don't know how long I can keep it up! I'm so stressed out right now I don't know what to do anymore! I too need to find someone who understands what it's like to have SO MANY %$#&@* autoimmune diseases that you feel like a freak who should be in a medical research study!

I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

Two of my aunts died from complications of lupus. One of my adult daughters has lupus too.

Now I think I have lupus, and it scares me....

JoAnn

Welcome to our group JoAnn! I'm curious about what you do for NASA. I'm a pilot, and I've been facinated by everything NASA since my father took me to the Smithsonian when I was a kid.

Sorry to hear about all the problems you are having. I have been dealing with SLE since I was diagnosed in 04. I was diagnosed last year with MS as well. Many of us here have overlapping autoimmune disorders. Anyway, welcome to our group!

Rob

nasalady
09-20-2009, 08:56 AM
Welcome to our group JoAnn! I'm curious about what you do for NASA. I'm a pilot, and I've been facinated by everything NASA since my father took me to the Smithsonian when I was a kid.

Hi Rob, thanks for the welcome...I support a NASA mission called the Spitzer Space Telescope. I do love my work, but it's so hard to keep going with the pain, fatigue, vertigo, brain fog, etc. Fortunately they let me telecommute part of the time.

I also teach math part time at a local community college.


Sorry to hear about all the problems you are having. I have been dealing with SLE since I was diagnosed in 04. I was diagnosed last year with MS last year. Many of us here have overlapping autoimmune disorders. Anyway, welcome to our group!

SLE and MS....a very nasty pair of AI diseases! I'm so sorry to hear about your diagnoses.

Yes, it's very common to have more than one AI disorder; if you have one, you're far more likely to develop another.

P.S. Sorry Jeanette, I didn't mean to hijack your thread! :sorry:

rob
09-20-2009, 08:57 AM
Hello, my name is Jeanette, and this is my story.:unsure:

Hi Jeanette,

I responded to your other thread, and said hello on your profile page. Welcome to our group!

Rob

Oluwa
09-20-2009, 09:00 AM
Our days..sick, sicker and sickest...I get ya..

I have SLE, Sjogrens, Fibromyalgia, GERD and a few miscellaneous items in my cart.

Though I'm not identical to you, our trials and tribulations will differ...many times I would rather be in the dirt but I also find hope and crawl out from underneath the rubble pile.

I experienced a wonderful day yesterday..energy soared through my body and mind. My eyes filled with joy, I was filled with elation..I swell with tears...wow I feel sick...not sicker, not sickest...it was a wonderful feeling. I wondered how long it would last. So, I shook those thoughts out of my head and said enjoy your 'sick' day...I did...

It was fleeting..I woke up this morning and I feel like a turd. Sicker...though not my sickest. Humm...disappointed. That day gave me more hope...once again I remember what it felt like to feel almost good...and girl, I have hope I will have another...maybe tomorrow..

I was on Imuran..now I am on MTX..maybe I am finding my right drug combo...have you tried other drugs in the immunosuppressant family....what are your current drugs?

Welcome with a warm tight hugs..
Keep looking for your wellness, Jeannette...I am.

Love,
Oluwa

rob
09-20-2009, 09:09 AM
Hi Rob, thanks for the welcome...I support a NASA mission called the Spitzer Space Telescope. I do love my work, but it's so hard to keep going with the pain, fatigue, vertigo, brain fog, etc. Fortunately they let me telecommute part of the time.

I also teach math part time at a local community college.



SLE and MS....a very nasty pair of AI diseases! I'm so sorry to hear about your diagnoses.

Yes, it's very common to have more than one AI disorder; if you have one, you're far more likely to develop another.

P.S. Sorry Jeanette, I didn't mean to hijack your thread! :sorry:

Yes, I have two of the worst A.I.'s there are. I find that dealing with two diseases is not much different than dealing with one. It's funny, The MS diagnosis was not nearly as shocking and scary as the Lupus diagnosis. I guess you learn to accept things.

On a different subject, I've been building models for a couple of local museums, including a model of the Shuttle Discovery. If you go to my profile page and click on my "Toy Room" photo album on the right side of the page, you can see a couple of pictures of it.

Rob

P.S. I'll have to read up on the Spitzer Space Telescope as I'm not familiar with it.

dulcepiragua
09-20-2009, 01:35 PM
Hi, I'm sorry to hear about all you need to deal with, I have SLE also sjgorne syndrome,fibromyalgia,low thyroid,depression,anxiety. Right now im takin Plaquenil, 3 meds 4 my depresion ans 1 for sleeping that sometimes dosen't work,I understand how you feel I'm been so tired and achie or witout strenght that I'm not able to go no were .Or simple I dont feel like going nowere spend weeks at my room very depressed,every day is diferent so I never know how I'm gona feel,stiil trying to get Social Security been denied 3 times because "i'm to young" right now im 47 almost 48,have 4 kids,but never feel so miserable.Plus I get food stamps and now I don't qualify for medicaid,so now I dont have no insurance,I survive with an income of $402.00 monthly from my son hes 18 wenever he finished high school benefits are gone.So is a fight every day,I have hopes Believe what the Bible promise and I'm waiting for that,is the only thing that hold me from killing my self.well you can contact me any time we can share our pain and strugles,with Love maria

Oluwa
09-20-2009, 01:51 PM
No tmeant to hijack the thread..but..

Dulcepiragua...

Have you hired a lawyer to assist you in appealing your SS benefits.

Attorney fee...
There is a cap on his fees. If you're denied benefits he does not collect a fee. If approved he will receive the payment from the backpay of benefits..the date you applied...

An Attorney or Representative for a disability case is allowed to receive 25% of a Claimant's past due benefits. So, if a Claimant receives a back payment of $10,000.00, a representative will receive $2,500.00 as the fee.

The maximum fee amount an attorney or representative can receive, however, regardless of how much the Claimant receives in past due benefits, is $5,300.00.


Follow this link for autoimmune disease info at SSA... http://www.ssa.gov/disability/professionals/bluebook/14.00-Immune-Adult.htm

Maybe the links below will yield some answers for you on the chances of being approved and the process. It isn't the official www.ssa.gov (http://www.ssa.gov/) sites though, below......
http://www.disabilitysecrets.com/ref...-pages-11.html (http://www.disabilitysecrets.com/reference-pages-11.html)

Hope this helps...
Hugs,
Oluwa

Angel Oliver
09-20-2009, 02:11 PM
Hello and welcome Nasalady also. I am so sorry what you are also going through.But between us all we will support you.

I know it seems like there is o light at the end of the tunnel right now,but believe me, that light will shine.Being sick and going through what we all go through is very scary,when once we were all active and social. Then one day its taken away.I am glad you are working,well done to you.But just take it slow.Keep posting,get it all off your chest.When our own friends and family do not properly understand us,we need to chat,scream,cry until we know 'someone' understands our pain and our fears.This is what WHL is for.All the members will always support you,listen,so dont be afraid to tell us all.

So glad you found us.Now you have people who will truley try to help you through this time. Keep strong and have hope.

love n gentle hugs
Amanda.xxxxxxxx

nasalady
09-20-2009, 04:25 PM
Hello and welcome Nasalady also. I am so sorry what you are also going through.But between us all we will support you.

I know it seems like there is o light at the end of the tunnel right now,but believe me, that light will shine.Being sick and going through what we all go through is very scary,when once we were all active and social. Then one day its taken away.I am glad you are working,well done to you.But just take it slow.Keep posting,get it all off your chest.When our own friends and family do not properly understand us,we need to chat,scream,cry until we know 'someone' understands our pain and our fears.This is what WHL is for.All the members will always support you,listen,so dont be afraid to tell us all.

So glad you found us.Now you have people who will truley try to help you through this time. Keep strong and have hope.

love n gentle hugs
Amanda.xxxxxxxx

Thank you Amanda....your message of support means a lot.

I really mourn the loss of the active person I was! It's so true that you don't realize what you have until you lose it....I remember taking my "good health" for granted.

I know I'm lucky to still be working, and I want to keep on working as long as possible. I'm the only person in our family with a job now...I'm so scared that I might have to stop working. I really don't know what we would do.

Still, I know I'm not the only one here who is/has been in this situation, and that's one of the reasons I joined this group. I know that I'll be able to learn a lot here from all of you.

(((hugs)))
JoAnn

Angel Oliver
09-21-2009, 01:31 PM
Joan,

You know what.....someone once said to me after i was telling them how i missed my old life of travelling the world,out with friends,in fact just having friends then as they soon left when i got sick.But someone once said dont worry as god is in charge of what you will need.I took that to mean money,care,support.Im not very religious,but i know there is something.So far since being sick,it is true.I found this forum and now have support and learning every day.Ive not much money at all,but enough to live and cope with....i still do the lotto every week though :) ok no lucky nimbers have come up yet,but im still gonna try it lol.
If i could turn back time,i wouldnt.Now after sickness,i am getting a little stronger,the loss of friends isnt so hurtful im getting used to being alone,i do see 2 friends maybe 2 or 3 times a year,but in the beginning the very thought of being sick and coping alone made me cry all the time i hated it.Now im such a better person and learning to understand everything that comes with an illness.And you know slowly im coping with it all.When i dont cope i come here and members show me another way to cope.There is always an answer,even when im convinced there isnt.
Just take work slow as you can.Just think for today and not about next month cause ive tried that and like you said,you worry about the future then,stress makes you sicker.I know its human nature to think about the future,but im slowly learning to just live for the moment.That way i can cope better and feel not so overwhelmed with life.
Yes we all mourn for our old life,but just because you are sick isnt the end of life.Its just slower thats all.Some weeks will be hell,then out of the blue a good day comes along,then a good week comes along.Always keep the hope.You have us now,so together members here will always help you.
Ive waffled again lol.....hope you have had a nice day today.

Lots of love Amanda.xxxxxxxx

mountaindreamer
09-21-2009, 05:11 PM
hi joan, just checking to see if you are feeling better today....i am glad that you joined our family.

sophie
12-20-2009, 09:31 AM
Hello my name is Sophie, I am newly diagnosed with Lupus. I beleive like you I have had it longer. Some days I don't think I can make it another day. Beleive it or not I was just saying to myself this morning if I could find 1 person this sick I would make it through this.I would love to chat with you it is sort of nice to speak with someone that feels as bad as you do. I pray you have more good days than bad. My e-mail is dianemuns@yahoo.com, or facebook at diane muns

sophie
12-20-2009, 09:33 AM
Hello my name is Sophie, I am newly diagnosed with Lupus. I beleive like you I have had it longer. Some days I don't think I can make it another day. Beleive it or not I was just saying to myself this morning if I could find 1 person this sick I would make it through this.I would love to chat with you it is sort of nice to speak with someone that feels as bad as you do. I pray you have more good days than bad. My e-mail is dianemuns@yahoo.com, or facebook at diane muns
i meant to say that it would be nice to speak to someone that feels as bad as i do. Sorry

Saysusie
12-20-2009, 09:46 AM
Oluwa;
No such thing as "hijacking" a thread. Especially when you've provided such valuable information! Thank you for the research that you did to find this information and thank you for providing it here. I am so certain that it will be very useful to many of our members!!

Always
Saysusie

Saysusie
12-20-2009, 09:47 AM
Sophie;
You offer was so very sweet and I am sure that your first post was understood as such! Welcome to our family!

Peace and Blessings
Namaste
Saysusie

Bonita
12-20-2009, 11:44 AM
I am fairly new to this web site but it has been a God send to me because i personally did not know anyone who had these dieases and the support and kindness is overwhelming and much appreciated. I am a walker but it is getting increasingly harded to walk as far and i rely on pain meds to get me there anymore but i do not want to give up so i endure the pain and also try to kepp up with my two youngest grandchildren. Welcome and glad to know you and i say my prayers every morning and have put the whole family of we have lupus on my prayer list so love and prayers Bonita

kim,l
12-20-2009, 03:58 PM
hi welcome to the site i was diagnosed ayear and a half ago i spent 5 months in wheelchair last year needing help to walk i have lupus, angina,highbloodpressure arthritis andthyroid problems, depression, i have more bad days than good i am on walking stick in process of buying walking frame and will eventually need one of those motorised mobility scooters or wheel chair i am on mexotrexate plaquenil, prednislone, lipitor thyroxine, somac, cartia aspirin, and cardizem, and valium, and endone for pain as well as zostriz cream for burning and electric shocks in arms and legs i also take maxolon for nausea animmodium for dioreah i also have colieacs disease and double and blurred vision so i need prisms on my glasses to see i spend most of my time confined to house . you will find you get a lot of support from the people here they have made a difference in my life and i am greatful to have people to talk to welcome again and merry christmas hugs kim l from australia

JHJISSICK
12-20-2009, 06:23 PM
Dear Jeanette,

You and I do have some things in common, I think. And I'm so sorry to hear what you've been going through!

I'm brand new to this site. I guess this is my introduction!

I don't have a diagnosis of lupus yet.....just Hashimoto's thyroiditis, asthma, psoriasis, autoimmune hepatitis, celiac disease, Sjogren's Syndrome, Raynaud's syndrome, rheumatoid arthritis, and fibromyalgia. :worried:

I'm in a wheelchair but can walk or stand for short periods (few minutes). I'm still working full-time plus a part-time job. But I don't know how long I can keep it up! I'm so stressed out right now I don't know what to do anymore! I too need to find someone who understands what it's like to have SO MANY %$#&@* autoimmune diseases that you feel like a freak who should be in a medical research study!

I just had a blood test positive for ANAChoice screen and anti-double-stranded DNA antibodies (but my complement C3 was high), plus I've been getting the malar rash and photosensitivity rash too. I've also had urinary problems lately (incontinence, blood in urine, frequent infections).

Two of my aunts died from complications of lupus. One of my adult daughters has lupus too.

Now I think I have lupus, and it scares me....

JoAnn
JoAnn,

Thank you for your response, and I am so sorry to hear that you are going through all of this and left working 2 jobs on top of it!

Why is it that your Doctor feels that you don't fit into the diagnosis for "Lupus"? That doesn't make any sense to me here. Have you thought about going to another specialist to get their opinion, as that would be my advice for you?!

Good luck, and please let me know what you have found out recently.

God Bless,

Jeanette

JHJISSICK
12-20-2009, 06:53 PM
Maria,

Please hire an Attorney to help you to win your Social Security case! They will charge you a percentage of what they recover, but it is money you never received, so you won't even miss it! You will be able to get it back to the day you became disabled, and well as all children under 18 at the time would have also been entitled to a check that would have gone to you. It is VERY rare for an individual to win their own case, and may even take the "Lawyer" a couple times themselves, but like I said, they only charge if they win, and then just a percentage of what they re-coop for you and your Family. I will hope and pray that you use this option, so that you can get rid of a great deal of your stress and depression. I feel terrible that I haven't been on for so long to respond to your letter, please forgive me as I have been very sick and extremely stressed out myself!

Also, please go see your Doctor and let him/her know how much pain you are having and how very depressed and stressed you are. Hopefully this way they can properly medicate you so that you don't feel as hopeless as it sounds as if you do. This is a terrible feeling we get when we feel there is nothing else to do to help ourselves, but we must remember that there is "always" something more! Please E-Mail me anytime, and I will be glad to talk to you, AND "don't forget" there is so much more help out there for you!

Take Care and feel Better. God Bless you,

Jeanette

JHJISSICK
12-20-2009, 10:10 PM
Hello my name is Sophie, I am newly diagnosed with Lupus. I beleive like you I have had it longer. Some days I don't think I can make it another day. Beleive it or not I was just saying to myself this morning if I could find 1 person this sick I would make it through this.I would love to chat with you it is sort of nice to speak with someone that feels as bad as you do. I pray you have more good days than bad. My e-mail is dianemuns@yahoo.com, or facebook at diane muns
Sophie,
Thank you so much for your response, and to this site for E-mailing it to me! I sent you an E-Mail to the address you had listed, and hope to hear back from you soon.