PDA

View Full Version : Just Introducing Myself



Elo
07-01-2011, 06:17 PM
Hi there!
I'm new to the forum - really, new to forums in general - and the little yellow help bubbles have guided me here, to the introductions page. :)

I haven't been sick very long - just since November of last year, but in the time that I have been sick it's certainly knocked my life on its butt. I haven't been diagnosed yet, beyond being told by a family doctor that I had a connective tissue disorder / autoimmune disease.

From the research that I have been able to do, I've found the top contenders to be Lupus, Sarcoidosis, or MCTD. Of all diseases however, I feel like Lupus seems the most like me.
I stumbled across this site looking for local support groups for something like me (there weren't any), and immediately connected after browsing site after site for a group for either all autoimmune, or specific AI disorders.
I really hope you don't mind that I've joined when I'm not quite sure if I actually have your namesake, it just seemed to be a place where I didn't feel like quite as much of a freak, hehe. (:

I obviously don't have much experience or knowledge to give, being that I'm so new to all of this, but I do have plenty of emotional support to offer, and an abundance of time to chat!

Thanks for letting me be a part of this site, I'm looking forward to learning more,
-Elo

ritzbit
07-01-2011, 06:29 PM
Welcome to WHL =) This place is so welcoming and it doesnt matter that you dont know for sure if you have lupus or some other disease. People here are so nice and alot of them have those things too; autoimmune diseases love company. I hope you find what your looking for here!

tgal
07-01-2011, 06:42 PM
First let me welcome you to WHL. This place was made for people that have been diagnosed, people waiting for a diagnosis, people trying to figure out what they have as well as the friends and family of the above mentioned please. Please make yourself at home. Look through the old threads or start new topics if you feel the desire. We are really glad that you have found us and I hope that you find the the answers and support that you are looking for

lovedbyHim
07-01-2011, 07:23 PM
Hi Elo, welcome to a great group of folks. You are perfect for our family! Can't wait to get to know you better. Blessings

Gizmo
07-01-2011, 07:34 PM
This is a wonderful place to get information and support while you are waiting for a diagnosis, and beyond (as Buzz Lightyear would say). Welcome!

Elo
07-01-2011, 07:45 PM
Thanks so much for your warm welcomes!
I've been surfing around on the forums and am feeling sooo at home atm! I was so surprised when I found out how little people know about autoimmune diseases, and how widespread it actually is. Looking through support group lists, they had page after page on specific types of cancer and small things that aren't very common, and yet the only autoimmune they had was Grave's disease and Lupus. Not to mention I've had multiple people have no idea what an autoimmune disease even is, and some people who pretend as if they do, but really have no idea.

Needless to say it's very nice being somewhere where I don't have people giving me a blank look when I tell them I have an autoimmune disease, or asking me "What does that mean?" "What's that?"

and I don't have to feel weird about not being normal or traditionally healthy.

Thanks again!

steve.b
07-01-2011, 11:18 PM
hi and welcome,
there is 63 auto immune disorders.
we have a thread listing them, and there basic description.
hope you are able to see a specialist.

Linda From Australia
07-02-2011, 12:13 AM
I've had multiple people have no idea what an autoimmune disease even is, and some people who pretend as if they do, but really have no idea.

I know how you feel Elo, I had a lady at the pool say to me Lupus was just like having hives. And then started to walk off. I then told her what it meant to have Lupus, and how I am affected. She dropped her jaw and went "OH".

rob
07-02-2011, 02:48 AM
Hello Elo,

Don't worry, you don't have to have Lupus to be a member here. In fact, much of our efforts here involve helping people who have yet to recieve a diagnosis figure out what they have, be it Lupus, or some other autoimmune disorder. As you've discovered, public awareness of autoimmune disorders is sadly lacking, yet these disorders are widespread.

Please make yourself at home, and welcome to our group.

Rob

BonusMom
07-02-2011, 09:36 AM
Welcome to the WHL family. As you've discovered, people are pretty ignorant when it comes to AI diseases. I work with people with advanced degrees yet they thought Lupus was related to AIDS.

Dumb, dumb, dumb....

ritzbit
07-02-2011, 09:50 AM
Welcome to the WHL family. As you've discovered, people are pretty ignorant when it comes to AI diseases. I work with people with advanced degrees yet they thought Lupus was related to AIDS.

Dumb, dumb, dumb....

One of my best friends at the time of my diagnosis loudly stated in front of my entire class that lupus was like AIDS and it made me thoroughly PO'd. People are so stupid.

Elo
07-02-2011, 12:25 PM
Welcome to the WHL family. As you've discovered, people are pretty ignorant when it comes to AI diseases. I work with people with advanced degrees yet they thought Lupus was related to AIDS.

Dumb, dumb, dumb....


I've noticed that the people who think it's related to AIDS or that all Autoimmune is like AIDS think that AIDS stands for Auto - Immune - Disease. (As if the S is there for no reason ;) )


And Linda - That's Horrible! It's bad enough to think that, but what on Earth would possess you to go up to someone with the disease and tell them about what they have, and that it's something that simple?? She must've felt like a real arse when you told her what it really meant!

Sometimes I wish people would just keep their mouth shut when they have no idea what's going on, and then go home and do some learnin'!

debbie-b
07-02-2011, 12:54 PM
Hi Elo,

Welcome, I am glad that you have joined us.
Like the others said, many people here are not yet diagnosed, but everyone is welcome.

Debbie

Peridot20_Gem
07-03-2011, 05:21 AM
Hello Elo,

Welcome to our lovely family of WHL and so nice to have you with us, wheather your waiting blood results or still trying to find out if you do have Lupus as the symptoms can be so strong at times, outsiders don't understand only those suffering and you've come to the best possible people to help you.
I've got A1 Diseases overlapping Autoimmune Diseases and it would help us all if you could give us some light into what your suffering, we're not Doctor's but we all have alot in common with diifferent diseases related to it.

Have you seen your doctor to get refered to a Rheumo specialist??...to try and help you.

Venturing through the threads you'll learn so much regarding Lupus and anytime you need to vent there's always some one on 24/7 who will help the best they can.

It will be nice getting to know you Terry xxx

Elo
07-03-2011, 01:20 PM
Hello Elo,

Welcome to our lovely family of WHL and so nice to have you with us, wheather your waiting blood results or still trying to find out if you do have Lupus as the symptoms can be so strong at times, outsiders don't understand only those suffering and you've come to the best possible people to help you.
I've got A1 Diseases overlapping Autoimmune Diseases and it would help us all if you could give us some light into what your suffering, we're not Doctor's but we all have alot in common with diifferent diseases related to it.

Have you seen your doctor to get refered to a Rheumo specialist??...to try and help you.

Venturing through the threads you'll learn so much regarding Lupus and anytime you need to vent there's always some one on 24/7 who will help the best they can.

It will be nice getting to know you Terry xxx


I started getting sick in November of last year. Actually, that's not true, I never "started" getting sick, I just woke up one day feeling extremely tired and achey, nauseous, and weak. And then it just never stopped. After about two weeks I started to worry, and after a month or so I was really worried. Due to a fear of doctors and lack of insurance (I'm underage and the daughter of a single mother who couldn't really afford health insurance), I put off going to the doctor until 2 months in, when my boyfriend whom I live with finally convinced me to go to a clinic. They ran some basic tests - Urinalysis, basic blood stuff looking for anemia and blood count, blood pressure and etc, but couldn't find anything except that I had a moderately high white blood cell count. They thought it was just stress.
But anyways, that's not really important. The important thing is that that Dr. was the first of what seemed like many, most of whom were either jerks, or didn't believe I was actually sick (sometimes both).

Right now my symptoms are mainly fatigue (I sleep about 10-12 hours a night, and still take a 3 hour nap or two every day, and am crazy tired by the time bedtime rolls around), weakness (sometimes even lifting a spoon seems heavy, and I try to avoid lifting anything heavier than a milk jug), Abdominal pain, stomach aches, nausea, chest pain (my doctors for some reason are absolutely convinced that this is heartburn, even though it doesn't always occur when I eat, has no pattern, is on the right side or center of my chest, feels nothing like heartburn, and isn't helped by tums, pepto bismol, nexium, or omeprozole). Shortness of breath, mainly with the chest pain. Easy bruising and lately i've been extremely sensitive - you can poke me and it'll hurt and ache for a few minutes. Oh, also headaches. They come and don't go away for days on end. Then of course the muscle weakness and soreness, joint pain, and brain fog. My cognitive skills tend to fade a lot, especially when I use them above a certain limit. If I do anything that takes much brain power (even looking up AI diseases), after about 30 minutes I can't comprehend much of anything and get extremely tired. Plus a lot of confusion and problems connecting at times.
My symptoms get worse and I become more sick when I exercise, and I've noticed also when it's hot and humid.

I used to have panic attacks when the pain (chest/abdominal) got really bad, and I got scared because I didn't know what it was or what I could do, but i'm now on a mild antidepressant and that has stopped.
That's about it. I have no skin involvement, so that rules out a lot of AI diseases, I'm not anemic, and my thyroid isn't underactive (not sure if it's overactive or not).

My doctor ordered some blood tests to be done, and based on the ANA she told me that I have a low level connective tissue disorder/autoimmune disease. She told me that eventually I would need to see a rhuematologist, but that since I didn't have insurance, it would be too expensive for me and that there wasn't much point in going to get diagnosed with something specific because it wouldn't make much of a difference either way. She had me go on fish oil, vitamin D, and stick with my antidepressant Citalopram, and then suggested I check out an anti-inflammatory diet to help cut down inflammation and hopefully pain.

Peridot20_Gem
07-03-2011, 01:52 PM
I started getting sick in November of last year. Actually, that's not true, I never "started" getting sick, I just woke up one day feeling extremely tired and achey, nauseous, and weak. And then it just never stopped. After about two weeks I started to worry, and after a month or so I was really worried. Due to a fear of doctors and lack of insurance (I'm underage and the daughter of a single mother who couldn't really afford health insurance), I put off going to the doctor until 2 months in, when my boyfriend whom I live with finally convinced me to go to a clinic. They ran some basic tests - Urinalysis, basic blood stuff looking for anemia and blood count, blood pressure and etc, but couldn't find anything except that I had a moderately high white blood cell count. They thought it was just stress.
But anyways, that's not really important. The important thing is that that Dr. was the first of what seemed like many, most of whom were either jerks, or didn't believe I was actually sick (sometimes both).

Right now my symptoms are mainly fatigue (I sleep about 10-12 hours a night, and still take a 3 hour nap or two every day, and am crazy tired by the time bedtime rolls around), weakness (sometimes even lifting a spoon seems heavy, and I try to avoid lifting anything heavier than a milk jug), Abdominal pain, stomach aches, nausea, chest pain (my doctors for some reason are absolutely convinced that this is heartburn, even though it doesn't always occur when I eat, has no pattern, is on the right side or center of my chest, feels nothing like heartburn, and isn't helped by tums, pepto bismol, nexium, or omeprozole). Shortness of breath, mainly with the chest pain. Easy bruising and lately i've been extremely sensitive - you can poke me and it'll hurt and ache for a few minutes. Oh, also headaches. They come and don't go away for days on end. Then of course the muscle weakness and soreness, joint pain, and brain fog. My cognitive skills tend to fade a lot, especially when I use them above a certain limit. If I do anything that takes much brain power (even looking up AI diseases), after about 30 minutes I can't comprehend much of anything and get extremely tired. Plus a lot of confusion and problems connecting at times.
My symptoms get worse and I become more sick when I exercise, and I've noticed also when it's hot and humid.

I used to have panic attacks when the pain (chest/abdominal) got really bad, and I got scared because I didn't know what it was or what I could do, but i'm now on a mild antidepressant and that has stopped.
That's about it. I have no skin involvement, so that rules out a lot of AI diseases, I'm not anemic, and my thyroid isn't underactive (not sure if it's overactive or not).

My doctor ordered some blood tests to be done, and based on the ANA she told me that I have a low level connective tissue disorder/autoimmune disease. She told me that eventually I would need to see a rhuematologist, but that since I didn't have insurance, it would be too expensive for me and that there wasn't much point in going to get diagnosed with something specific because it wouldn't make much of a difference either way. She had me go on fish oil, vitamin D, and stick with my antidepressant Citalopram, and then suggested I check out an anti-inflammatory diet to help cut down inflammation and hopefully pain.Hello Elo,

Thanks for explaining to we your symptoms but at least your boyfriend got you started in one way and mentioning doctor's some are a right load of rubbish and with lupus it can give off false reading's, i was lucky they got the lot with me after draining the life out of me refering my blood but took 6mths to show itself properly for the aneamia besides i had it a good while ago.

That's a good sign of anything related to Lupus the 10-12hr shifts you sleep besides in between when you can and the fatigue is terrible it's like an idol feeling which flustrates your head when you've not always been that way.
Refering your chest pain i've got that and the shortness of breath besides the muscles around my lungs swollen and when i saw my gp he felt my back as the swelling was like a form of a lump and he said the lupus is going mad with you and now i've just been added to another steriod inhaler to help. They should be checking your breathing by testing you and also running a test for lung diseases.
I've just read the rest of your symptoms, as you know we're not doctor's and can only help and reading helps your knowledge concerning it but you can't think to yourself i've got this disease or i have that disease until tests are run but this is me saying this from what you've said i'd say your definitely Lupus linked as your going through to many issues not to be.
Try to avoid direct sunlight and sit in the shade and wear sun bloke and clothes that cover you up besides hat and glasses i know it sounds extreme but if the sun starts intefering with you a possible flare could happen until you find out, it's such a pitty also that you can't be refered to a Dermo as they soon run bloods to find out.

Just say you have Lupus and your bloods are not showing results...aneamia makes you bruise quickly, you may have thyroid trouble and it's not showed and refering your skin involvement, you say the heat just being hot and humid can affect you, a flare does'nt always start straight away and some people don't get them just the heat alone makes them ill.
Lupus itself thrieves on stress and depression, i'm a manic depressive and there's hardly a day go by without me crying, it really can drag you down knowing how active you was.

I know your doctor is helping in otherways but in one way you do need to find out what autoimmune disease you have because medication can help you live a better life, sometimes the meds have to be altered, i'd just have another chat to see what he/she thinks about it again.

Thank you again for sharing your history and if anything occurs with you besides and are'nt sure just had a thread and one of we will answer as soon as possible.

Hugzzzzz you way Terry xxx

Manderson
07-03-2011, 02:56 PM
Elo - I am not dx'ed yet, so we'll wait together eh?

Peridot20_Gem
07-03-2011, 03:10 PM
Elo - I am not dx'ed yet, so we'll wait together eh?
Oh Marie...now what a lovely comment in support for you both. "Fantastic & so sweet"

Elo
07-03-2011, 04:03 PM
Hello Elo,

Thanks for explaining to we your symptoms but at least your boyfriend got you started in one way and mentioning doctor's some are a right load of rubbish and with lupus it can give off false reading's, i was lucky they got the lot with me after draining the life out of me refering my blood but took 6mths to show itself properly for the aneamia besides i had it a good while ago.

That's a good sign of anything related to Lupus the 10-12hr shifts you sleep besides in between when you can and the fatigue is terrible it's like an idol feeling which flustrates your head when you've not always been that way.
Refering your chest pain i've got that and the shortness of breath besides the muscles around my lungs swollen and when i saw my gp he felt my back as the swelling was like a form of a lump and he said the lupus is going mad with you and now i've just been added to another steriod inhaler to help. They should be checking your breathing by testing you and also running a test for lung diseases.
I've just read the rest of your symptoms, as you know we're not doctor's and can only help and reading helps your knowledge concerning it but you can't think to yourself i've got this disease or i have that disease until tests are run but this is me saying this from what you've said i'd say your definitely Lupus linked as your going through to many issues not to be.
Try to avoid direct sunlight and sit in the shade and wear sun bloke and clothes that cover you up besides hat and glasses i know it sounds extreme but if the sun starts intefering with you a possible flare could happen until you find out, it's such a pitty also that you can't be refered to a Dermo as they soon run bloods to find out.

Just say you have Lupus and your bloods are not showing results...aneamia makes you bruise quickly, you may have thyroid trouble and it's not showed and refering your skin involvement, you say the heat just being hot and humid can affect you, a flare does'nt always start straight away and some people don't get them just the heat alone makes them ill.
Lupus itself thrieves on stress and depression, i'm a manic depressive and there's hardly a day go by without me crying, it really can drag you down knowing how active you was.

I know your doctor is helping in otherways but in one way you do need to find out what autoimmune disease you have because medication can help you live a better life, sometimes the meds have to be altered, i'd just have another chat to see what he/she thinks about it again.

Thank you again for sharing your history and if anything occurs with you besides and are'nt sure just had a thread and one of we will answer as soon as possible.

Hugzzzzz you way Terry xxx

Thanks so much for listening and taking my symptoms into consideration :) When I was sick and still had no idea what the problem was, my mother suggested I look up autoimmune diseases, since everything else I looked up just wasn't making any sense or fitting. The first AI disease I stumbled across was lupus, and I immediately thought "Wow. That's me, without the skin issues!". It's been a few months since then, and I'm still feeling like that's what it is- or at least it's a huge possibility. I know it could also be MCTD, or something else, but Lupus is definitely something that I resonate with having.
I, too was (and am) battling with depression when I got sick. I hated not being able to do anything, not being able to go anywhere. The highlight of my week was going to the grocery store (even though sometimes i'd find myself standing in the middle of the isle, eyes glazed over, feeling dizzy and confused and like I was going to tip over at any second). And if I didn't go outside on a short walk at least every other day, I'd get stircrazy and pissed because I felt trapped. Thankfully, the antidepressants I'm on have definitely helped with that, and even though I still feel like an invalid sometimes, i'm doing better. I'm glad I'm on them, because I know i'm still in shock from my doctors (minimal) diagnosis, and if I didn't have them, I have a feeling i'd be drowning.

Dealing with manic depression is really hard, and I can't imagine how hard when you have so many more reasons to be depressed and upset than a lot of people. But from what i've seen in the forums, you have a great family, so I hope they help you with that :)


Manderson- indeed we will! (:

steve.b
07-03-2011, 08:32 PM
i read you list of symptoms,and then re read them.
it was like you were describing mine.

i have been diagnosed with lupus and fibromyalgia.

i reccommend going to a rhuematologist. i know the financial situation.
but i have been on medication for about 3 years, and the difference is increadable.
my lupus is being controlled by my meds.
unfortunatelly, my fibro is not yet under control.

is there any way to apply for a discount ?
is there a rhuemy that does "social work".

i used to be very proud, and would not think of asking for a discount.
i used to earn $160,000 a year.
now i am on disability and earn about $50,000 and have to support my family as well.
i ask for discounts, even when i go grocery shopping.

it is not about finding a name for your problem, even though that helps.
it is about finding a way to survive.
it is about finding a way to gain a little control.

Elo
07-03-2011, 09:27 PM
To be honest, I never realized that there was actually much medication out there besides steroids, which I was told should only be used in small doses, before the meds outweigh the benefits. I was also told the medicine would be too expensive and possibly harsh for me, but since getting on here and looking around, I'm definitely leaning more towards seeing a rheumatologist. I'm not opposed to asking for help - in fact, each time I got orders from my doctor for tests, I called every hospital I could to see who had the best rate for those without insurance. I've pondered looking into getting medicare/medicaid, but to be honest I don't know much about them, and i'm not sure if I would have to be diagnosed first to apply or not, or what would happen there.

I am going to see my doctor for a checkup sometime in the next month or two (haven't set up an appointment yet, not sure if I want it sooner or later, but need to go back before too long), and at that point i'll definitely discuss everything with her.

I know I could ask about her referring me to a rheumatologist, and call around to get an idea of rates and see if I can plan towards that - but I'm also unsure of what the cost of medications would be and if I would be able to afford them.

I also have some super fun bills coming up soon, like needing new glasses and an eye exam. Even now i'm thinking that I'm going to plan towards seeing a rheumy, even if it's not until the end of the year, instead of my original plan, which was in two years.

Sheesh, being on here has been so helpful already - not just how nice it is talking to everyone, but i'm learning so much my doctor never even mentioned!

tgal
07-03-2011, 09:33 PM
To be honest, I never realized that there was actually much medication out there besides steroids, which I was told should only be used in small doses, before the meds outweigh the benefits. I was also told the medicine would be too expensive and possibly harsh for me, but since getting on here and looking around, I'm definitely leaning more towards seeing a rheumatologist. I'm not opposed to asking for help - in fact, each time I got orders from my doctor for tests, I called every hospital I could to see who had the best rate for those without insurance. I've pondered looking into getting medicare/medicaid, but to be honest I don't know much about them, and i'm not sure if I would have to be diagnosed first to apply or not, or what would happen there.

I am going to see my doctor for a checkup sometime in the next month or two (haven't set up an appointment yet, not sure if I want it sooner or later, but need to go back before too long), and at that point i'll definitely discuss everything with her.

I know I could ask about her referring me to a rheumatologist, and call around to get an idea of rates and see if I can plan towards that - but I'm also unsure of what the cost of medications would be and if I would be able to afford them.

I also have some super fun bills coming up soon, like needing new glasses and an eye exam. Even now i'm thinking that I'm going to plan towards seeing a rheumy, even if it's not until the end of the year, instead of my original plan, which was in two years.

Sheesh, being on here has been so helpful already - not just how nice it is talking to everyone, but i'm learning so much my doctor never even mentioned!

The good news is that the majority of meds are available in generics. I have no insurance and live on very little (you really don't want to know how little) and I can afford them. I am actually on 8 meds at the moment and my most expensive is about 40 dollars and the majority are 10. Hope that helps

Peridot20_Gem
07-04-2011, 06:23 AM
Thanks so much for listening and taking my symptoms into consideration :) When I was sick and still had no idea what the problem was, my mother suggested I look up autoimmune diseases, since everything else I looked up just wasn't making any sense or fitting. The first AI disease I stumbled across was lupus, and I immediately thought "Wow. That's me, without the skin issues!". It's been a few months since then, and I'm still feeling like that's what it is- or at least it's a huge possibility. I know it could also be MCTD, or something else, but Lupus is definitely something that I resonate with having.
I, too was (and am) battling with depression when I got sick. I hated not being able to do anything, not being able to go anywhere. The highlight of my week was going to the grocery store (even though sometimes i'd find myself standing in the middle of the isle, eyes glazed over, feeling dizzy and confused and like I was going to tip over at any second). And if I didn't go outside on a short walk at least every other day, I'd get stircrazy and pissed because I felt trapped. Thankfully, the antidepressants I'm on have definitely helped with that, and even though I still feel like an invalid sometimes, i'm doing better. I'm glad I'm on them, because I know i'm still in shock from my doctors (minimal) diagnosis, and if I didn't have them, I have a feeling i'd be drowning.

Dealing with manic depression is really hard, and I can't imagine how hard when you have so many more reasons to be depressed and upset than a lot of people. But from what i've seen in the forums, you have a great family, so I hope they help you with that :)


Manderson- indeed we will! (:Hi Elo,

Your mom did right suggesting Autoimmune diseases and that helped you looking up the Lupus and i still say there's a strong possiblity that your linked, there's to many symptoms not to be.
Refering depression i've had it for years besides seizures, strokes, DVT, born with a disfigured back through spondalitis and so much more and then having the rheumo telling me i was born with it and everything i've gone through Lupus caused besides the manic depression and within the last 2yrs it's like it's having a field day with my body.
How your on depression tablets i've took a right cocktail since i was 18 and nothing helped so now it's fight with me when it arrives and it's here more now than it leaves me i used to get a break but not so much now and my lovely hubby found WHL for me and it's the best site i've found and in my eyes we are all miles apart yet they have been through so much with me and the loyalty is beyound belief, i was welcomed straight away by Rob, tgal, and many more and never looked back as they are my 2nd family and you being so ill like you are..it's an excellent way of total support while going through the process of finding what's wrong.

We all suffer that lost situation of foggyness and have'nt got a clue what we intended to do, refering you with your shopping.
Well how your feeling trapped i'm stuck in the home more or less 24/7 and my hubby as took quite abit on besides, my dermo as stopped me going out if it's cold with my raynauds and when it's hot no shade anymore as i do have a bad flare...so your circumstances your living in i truely understand what your feeling and going through besides a large majority of us.

Love Terry xxx