View Full Version : Please....I need some help

03-09-2007, 11:10 PM
I'm 27 years old, and was finally diagnosed with Narcolepsy a couple of years ago, after 8 years of telling Drs. that something was wrong, and having them tell me that my bloodwork was fine & I probably just suffered from depression.

I take 80mg of Adderall a day, but in September, it stopped working so well, and about the same time, my wrists, elbows, fingers & shoulders started to hurt, and then my hips shortly followed. Some days are worse than others, but it seems that it's pretty much equal as far as left & right. i.e. if 1 hip hurts, they both hurt- if my finger joints hurt, all 10 are affected.

Also, I noticed that I had lymph nodes that would randomly swell.

By mid November, my toe joints started to hurt, and my feet and toes turned dark purple. At the same time, I got this bumpy rash on my toes, that itched terribly at night. I sometimes have no sensation in my toes at all, and now, sometimes even my legs go completely numb, and I can't stand.....like they're "asleep", but as they gain back a little sensation, they never get that "pins and needles" feeling at all, but just gradually gain some feeling.

I started having daily headaches, fevers most evenings, disgusting- drenching night sweats. My vision(which had always been perfect) seemed to quickly deteriorate- mostly depth perception, night vision.

In addition, I've had this nagging pain, under my right rib cage, that a GI Dr. said was "probably" my gal bladder(about 2 yrs ago), though didn't find anything diagnostically evident. Last year, very suddenly, I had an intense pain there, that lasted for 5-6 hours. A couple of weeks ago, it came just as intense, but only lasted a few seconds. This is the most intense physical pain that I've ever felt, with the exception of childbirth, which I would call "equivalent".

Being as that I never seem to find a confirmed answer, or the interest from Dr.s to do anything other than "quick fixing" my symptoms, I put off a Drs. appt., until Jan. After a week, I called to find that the Dr. had taken a vacation after my appt. that Fri. I DID get from the nurse that my White BC cnt. was 3.2. I tried to call after another week, and then a couple of times after, but the Dr. wouldn't return my calls.

I got so bad a couple of weeks later, that my husband took me to the ER, where I was discovered to have a bladder infection(I also keep getting sinus & ear infections). That Dr. said that I should see a Rheumatologist, and recommended one. The Rheumatologist wouldn't see me UNLESS I got a referral from the Dr.- Ya know, the one that won't return my calls.

I'm just lost. I don't like to go to the Dr., because they seem, not only impersonal, but also condescending, as if I'm exagerrating. I just want them to find out what I can do to get back some quality of life.

Last year, I was running a $multi-million unit for a nationwide company- Now, I'm so sick, that I'm living in poverty, in a govt. subsidised apt., and have had to turn over my 3 little girls to my ex-husband, due to the inevitable circumstances resulting from being sick so much.

Could anyone tell me if this sounds like Lupus? Or, what else could be an option? And what I might be able to do to get some help? I'm desparate to be back with my girls again, and would appreciate <u>any</u> insight that anyone may have to share.


03-10-2007, 12:31 PM
greetings gradengail! i am so sorry that yr going thru this. it is quite a lot! yes, alot of what you listed souds like lupus. keep in mind though, that the lupus affects EVERYONE DIFFERENTLY which is why it can be so hard to diagnose.

i offer my prayers, and i say FIGHT! it will get better

be well :wink:

03-10-2007, 02:52 PM
Gradengail, I'm glad you found this forum. You'll find a lot of support and good information here.

You need to PRESS your doctor for tests and a referral to a good rheumatologist, or you need to find another doctor. I know sometimes that's hard to do, depending on your location or your insurance. Do you have a patient advocate in the clinic or hospital where you get care? Sometimes they can help. You need someone who will know what kind of tests to run. You may or may not have lupus - lots of diseases can look like lupus - but you certainly have something going on that needs diagnosis and treatment. The right medications can make a world of difference in how you feel.

Keep pushing, Gradengail. Don't give up - if a family member can press the doctors on your behalf, better yet. We'll be here to offer support and advice, but you MUST get the medical help you need. My prayers are with you.


03-11-2007, 03:20 AM
I have been really reluctant to go and seek another Dr. and have just put it off. I made an appt. w/ another Dr. a week ago, but then couldn't find my license for ID(since I never go anywhere anymore), so I couldn't go- & still haven't found it.

I pay Drs. in cash. If I can't pay, my father will cover any costs that I'm not able to cover. I now have an online store, since my once very prosperous retail mgmt career is not a possibility anymore.

All I want, is to be with my girls again. This has caused me to lose just about everything I have- my home, my vehicle, my children :cry: I now live in a really bad apt. complex, that I pay based on income, so I have to get out of here, before I feel safe with my girls here. I keep inside, and to myself, so that people won't know I'm here, but apparently some caught wind, because I had 2 men try to break in last night.

I work so hard, to try and make the money I need to get out of here, and bring my babies home, and worry about spending any money on Drs. care, because that's just longer until we're together again....BUT, I have such bad days sometimes(it seems I'll have like 2-3 good days, and then they're followed by a string of bad ones) that it's hard to find the physical capability to be productive. One day last week, I was so sick, and so angry at myself for feeling like I couldn't work hard enough, to do what I needed, to get out of this place. I was throwing up, and just kept pushing, always thinking that it was for my girls, and ended up having to go to the hospital that night.

I just don't know what to do! I feel SO torn....and it doesn't help, that without a diagnosis, the few people that I talk to on occasion in my family, tell me that, "I probably just have a Vitamin C deficiency", and my husband's family saying that I need to "Get a job". It brings me to tears every time. No one seems to understand that I CAN'T, and that it's 1000 times harder 4 me to deal with that fact when they act as if I'm just LAZY! There's so much I WANT to do, but lack the physical capacity to do it. If I were LAZY, I wouldn't take the risks and make the sacrifices to start an online business...I'd just push for disability and wellfare, but that doesn't seem to register with them. I'd always been hard working & stubbornly determined, AND STILL AM AND GIVE JUST AS MUCH OF MYSELF>>>>EVERYTHING>>>>>AS I DID BEFORE>>>>>I'M JUST CAPABLE OF LESS!

03-11-2007, 07:14 AM
Sweetie, you poor thing, what a frightening experience! Did you call the police about the break-in attempt? Maybe they can do some extra patrols around the complex and discourage anyone from trying again.

Have you started the application process for Social Security Disability and to try to get a medical assistance card? You might be eligible for other types of assistance as well. If you were able to get a medical assistance card, it would cover most of the costs of the medical care you need. If you aren't eligible for a medical card, many areas have free clinics or county health departments that charge on a sliding scale basis. There are many prescription assistance programs available to help with the cost of meds. So please, don't let your financial situation stop you from seeking medical care. I understand why you aren't seeing a doctor know, but, in the long run you can't afford not to go to a doctor. If you don't take care of yourself, who will take care of your children? Applying for disability is not "charity" - you paid taxes into the system - that's why it's there - to be a safety net.

Please keep us posted on how you are doing.

03-11-2007, 07:46 AM
Hi Gradengail

I am SO sorry that you are going through such a hard time. :cry:

Please just know that I am praying for you and your family.

Marycain has given you some good advice; I sincerely hope that you manage to get the medical care that you so desperately need. Your health is very important, especially to your two girls and you need to look after yourself to be able to look after them.

I'm really sorry that the people around you just don't understand; there is nothing worse than that, but, as hard as it is, just hold your head up high and ignore them because they are just being selfish and not trying to put themselves in your shoes.

I honestly admire your strength; you are an inspiration! :)

Please kept us posted and let us know how you get on!

Keep well and God bless you!

03-11-2007, 10:21 AM
It's been a real relief to hear someone acknowledge that I don't just need to "snap out of it" (since, of course, I'm incapable of that).

I HAVE found a facility that I can go to, where they will charge me based on income. If I could find my stinkin' driver's license, I could go!

I just feel like such a failure, to have been so prosperous, and then have to go on disability at 27 years old. I know that I have the business knowledge to provide for myself and my girls(4,8 & 9- oldest will be 10 in 2 weeks), but I lack the capacity to get things up and running. When I'm down for the count, during periods when my illness is bad(which it is right now....and I feel like I've done an extensive workout yesterday, am sick to my stomach, my joints ache, my toes are purple and have no feeling....Ugh!), I just am not capable of putting in enough of myself, to be productive enough to "get ahead".

I hope that if I have some other auto-immune disorder, I can still share with you all. You are the most incredible group of people I've met...and I pray that each and every one of you are able to take the reigns & perservere.

I'm going to "TRY" to include a picture of the latest doll that I just made. She's on an ebaY auction right now. She's a reborn baby~ or a doll that is recreated to look like a realistic & very lifelike baby with veining, mottled skin and individually hand rooted real angora mohair. Her name is Alana Dawn- which means "beautiful new beginning".

<div style="width: 480px; text-align: center;"><embed type="application/x-shockwave-flash" wmode="transparent" src="http://w175.photobucket.com/pbwidget.swf?pbwurl=http://w175.photobucket.com/albums/w160/Gradengail/1173632786.pbw" height="360" width="480"></embed>http://pic.photobucket.com/getyourown.gif (http://photobucket.com)</div>

03-11-2007, 10:26 AM

03-11-2007, 11:11 AM
Oh my goodness - that's a doll! I would have sworn I was looking at a photo of a real baby. You have a real talent. My mother collected dolls, and if she had ever seen that one, she would have been learnng how to use a computer just to get on ebay. But I can understand that with any craft that takes a lot of time, it's hard to do enough of them to make a steady income. I sell a few handcrafted items just for fun, but I usually sell my items to a friend who has an upscale gift boutique - no ebay listing fees or packing and shipping to worry about. If there are any gift stores or places like "creations" in your area, you might be able to sell some of your "babies" there too. If I had girls instead of boys, I would probably be bidding on your doll right now!

If you income is less than a certain amount per month, you can apply for social security disability and still keep working. I'm not sure what the cut-off is this year, but I think it's $900 per month. So if you were earning less than that through your online sales, you could apply for SSD with no problems. Your children might also be eligible for dependent's benefits.

Please don't feel that your situation is some kind of failure on your part. "Failure" implies something you can control, and you had no control over getting sick, any more than the folks on the Gulf Coast could control Hurricane Katrina. I know you wouldn't blame any of them for losing their homes or their livehihoods - why should you blame yourself? A serious illness is just a different kind of natural disaster. And you are dealing with it with courage and determination - you should feel proud of yourself, never ashamed!

03-11-2007, 11:41 AM
Actually...I AM from the Mississippi Gulf Coast....and that's actually a big problem too. Housing options are few and far between, and housing costs have multiplied my over 300% since Katrina! That's funny that you use that in reference, as we DID suffer through that.

It's just one thing after the other, but I have an almost cynical sense of humor(in some opinions), but think I'd just LOSE it, if I can't find a way to look at the bright side of everything.

In addition, I've had my identity stolen....twice in the past few months. I was held in "unlawful imprisonment" by a co-worker who was a big 6' 6" guy(I'm 5' 4" and about 115 lbs) last year. My grandfather passed last year, and a good friend commited suicide(He was the general manager of probably the most profitable Walmart in the state). I found out that my children were being abused by my ex-husband's brother(and then recently found out that they're staying there again, after school). I've even filed criminal charges against his brother, but he's only 15, so they haven't done anything about it.

Things just seem to pile up, faster than I can sort through them. I separated from my crew of friends when they started doing illegal drugs, so I don't have any sort of support system. I just try to keep focused on my goal, and move forward, but had reached a roadblock, and not known where I should go next. I DID know, that if I didn't figure it out fast, I'd lose all that I'd worked so hard to gain, very quickly.

I really appreciate your help. I have some DIRECTION now....and THAT is a HUGE relief!