May - Lupus awareness month

Wow, this month has just flown by...spreading awareness re: arthritis as well. I didn't realize that there were so many different types of arthritis? I've got rheumatoid arthritis, it may be due to my lupus? But, just because we see a rheumatologist doesn't necessarily mean you have rheumatoid arthritis. I knew, I had arthritis - but doesn't necessarily mean it's specialized. I'm in my mid thirties now, and it can be so painful. It was when one day, out-of-nowhere, well during a HUGE flare, my husband was trying to move me out-of-state because of another woman, ugh...but I was in deep depression, started just wearing totally black sweats, showered (which is much more than I can say now! It's been a month or so...), drove to and from work, stopped talking socially, also I could no longer look at myself in the mirror. I've never been so depressed in my life. Why is it when men cheat, it seems to be okay, run-of-the mill everyday thing? But, if a woman cheats, it's such a tragedy...and she's the neighborhood whore! I hate how men always seem to have the upper hand in everything?

I think the reason, that I never finished this in the month of May...bc May was a horrendous month and I am looking to God, more than I had in a very long time.  I ask God questions everyday, why me?  Not only does it affect me, but it affected my entire family's lives.

Last night, I spent a great deal on looking up organ donation in Colorado & Wyoming.  Since I had finally renewed my driver's license, I made my decision to donate.  There are so many things that they can take from your body, plus if you give a whole body donation, in the State of Colorado - they cremate your loved ones to help in "funeral" expenses.  One of my girl friends was pretty upset that they don't have that program...but just glancing over in OK, it is much more extensive and idk if it was the website that I was on...bc I was just clicking random sites.  All I know, is that there has to be a medical school or facility that could use her body, then return her remains already cremated.  Actually, if you type:  organ donation in Oklahoma free cremation...several sites popped up, but I'm not all that computer savy.

Due to whatever pain that I "may be" experiencing isn't quite totally lupus, per my rheumatologist.  He says that lupus pain can be treatable with pain medication.  I've been having strange things happening, pains, aches, swollen, red and definitely water retention.

Ugh, my life really sucks!!

Is it really Greed or Grieve?

I guess now we are in a pickle, I don't know who said that originally, but you generally you would hear that phrase on a cartoon or a comedy. The economy has taken a toll on everyone and it finally came around to hit us, and hit us hard. We are barely holding on and wonder how long we'll be able to last? My husband is not very optimistic because I'm on disability and I can't work... my husband believes that is what is currently happening to us, but it isn't... it's because he isn't getting much work, coming home earlier and earlier. He made a comment the other day, "since you've been on disability, it seems that we are going down..." assuming he's saying we are drowning with ship and anchor. I get Social Security payments, so isn't that my contribution? I've not worked now in a few years, I did some consulting, but other than that, nothing. I've pushed all of that out of my mind and I'm really trying to take care of me, my body. It almost seems as if it is daily, hours, minutes ... my brain is just getting useless, when I talked to my daughter about it, she said that I definitely can't produce what I used to and that it would be very difficult for me to enter the work force, and I agree. My husband on the other hand says, "If you weren't sick, you'd be working... doing what you did before." Seriously, is he just ignoring the fact of how much Lupus has already attacked my brain and I've had several injuries, which includes my head and I've definitely know that I've experienced Lupus Psychosis. I've had crazy mood swings for years now, it's only been worse with time. I've already gone through my grieving of losing my ability to work, acting psychotic at times, definitely having swing moods and now... I don't do anything anymore because I'm so ignorant or just forget altogether. I used to have such a memory that has totally left me and has been a blur for a long time now. I was thinking that I could answer phones or something, but my daughter said that I wouldn't know what to do and I never follow through with anything. How dare she? That is one thing I regret when raising my daughter is the importance of manners. She could at least take my feelings into consideration and not have said it so bluntly I wouldn't have felt to useless. My husband is totally in a dreamworld if he thinks I've got the same capacity that I used to be at when it's been almost four years since I've done any legal work. Everything changes with time, even I could relate to that...I keep wondering if he thinks that I could go back and be the same, he is in for a HUGE surprise. I think that in time that I may get back up to the way I was, but I definitely will need breaks to take naps. I get so tired these days and I could barely do two things a day, as it is, and we aren't talking rocket science... more like going to the grocery and/or bank. Having physical therapy (PT) and a doctor's appointment is an example of what two things a day means to me. Geez, a noise scared me! It was my phone vibrating so loudly that I can hear it from afar. And other times I can't even tell it's ringing? That makes my husband and daughter nuts if I don't answer, they just assume something bad has happened to me. I'm not that incompetent yet. I can still do little things here and there around the house, if I feel like it maybe I'm just plain being lazy? Ok I never thought I would say that to myself. I'd have to admit that I probably could do more, but then I get so much more exhausted, quicker too. Everything seems to be like a huge effort, Yes I know that I probably could do more exercise, but when I do things like going out it is a huge inventory for me to handle. I'll have to bring out two huge bags and with all my tanks, hoses and cannulas. I've always got to bring an extra one just in case. You never know and I've had to this happen to me more than once, so I definitely know and it is such a hardship, because if I get too tired...I could lose consciousness or have a grand mal seizure or an epileptic event. Then I would really be stuck at home.

finally...

Finally, I got Social Security Disability. It only took a little over two years!! This will save my family home. I have been praying so much. Also, asking prayers from all of my friends and family. At the hearing...I wasn't even sure if it was really approved because the Judge said something...I couldn't really hear, but I know the Judge asked all of us to leave the courtroom. As we left, my attorney turned to me and hugged me and said that we won!! I didn't want to get too excited until I see physical writing that I was approved. My order came today, six pages long, finally at the end - it claimed me disabled. Thank you Lord!! Now, I have to deal with the paperwork to get myself on medicaid and medicare. Which will really relieve the pressure on our finances. I don't even know what to do or say or anything. Ugh, I took a large, deep breath and let it go. It feels light...something lifted from my body, my mind, pressure has been relieved. Thank you, I will keep you posted.

How it Affected My Child

When Brittany was younger, there were times where should would be waiting in front of the house b/c she forgot her key, but basically it meant that I probably was in a hospital somewhere and Brittany would wait for someone to get her, if I could get through to someone. Then it became all common. The worse part was that she was starting her teenage life, and you know how kids want to be cool and not wear a jacket?? Wearing ridiculous things for whatever reason, but if I was sick on any day and that could be today, tomorrow or a week later. So if it was snowing, she would sit on the step in front of our house with her instrument and wait. Generally I would pick Brittany up from school and if I didn't and didn't get her a message, she would start walking. If I wasn't going to come, Brittany's dad would come home to take care of her, but I would be hospitalized down in Denver a lot, which meant he went down to Denver to be with me. From a very young age, Brittany grew up because Brittany had to take care of me, which saddens me, but what can I do now? It has already happened. When my husband wants to go up snowboarding, Brittany would have to set the alarm at 6:30 on the weekends to get up to feed me and make sure I took my morning pills. I have slow release pills and it has to be constant in my blood or it would just be painful for a while and the other times I would be so zoned. So it had to be taken at the same time everyday.
(*name was changed for anomity purposes)

Happy New Year!

Happy New Year!!! I know it has been a long time since I have blogged. I have been crazy busy with all of my doctor appointments and my continued battle with social security. I understand that I just have to be persistent, and I shall be awarded at one time in the future (We hope)! Today was a good day for me. I actually got out of bed and took a shower, which is huge for me. I even left the house which is very uncommon for me. I went shopping @ one of my favorite stores. I was so disappointed...I had ten dresses/items to try on. Not even one looked okay. I just looked like an overstuffed sausage. It was just horrid!!! This isn't a New Year's resolution, but I have decided to at least lose 10 pounds. I want to be realistic about losing weight. My husband wants me to lose 20 pounds & my daughter seems to think that I can lose 30! They are both nuts! There is no way, I just want to be realistic so that I won't be so disappointed. I am sure some people know what I mean, right? I just called my pharmacy because I just realized that I was supposed to pick up some meds on Monday. I have supposedly already met my co-pay because I was taken to the hospital for an emergency and I am almost positive that I am probably going to get a huge bill that will cover my high deductible. I was trying to avoid that, but what can I do? I asked not to be taken...but of course they would not let me go. After that incident, I now have to be religious on wearing my Medic Alert jewelry. I was totally passed out and was unable to speak. I guess I just missed a few minutes or up to half an hour of time. Of course there were many questions. But after I woke up, I was able and coherent to say my husband's work number and that I had Lupus. Of course they checked my blood sugar...but I ate breakfast and lunch already. So they gave me some medicine to empty out my stomach. Ugh, this is the second time that I have had that done. It is just awful and pretty gross. Oh well, happy new year to everyone out there :)

Reading...

Lupus Now had an interesting article called "Close to Home: Teens talk about parents with lupus". Lupus Now has always been a great magazine for me. It is more down to earth and easy to understand. They have articles that really appeal to real life people who suffer from lupus.

Lately, I haven't been blogging for several reasons. I won't go into all of that now, but I have been experiencing new medication: oxycontin. We started at 10 mg a day and now I'm up to 160 mg a day. This is trying to preserve the quality of life for me. So far it has been working, but driving is another part that we are working on. I try to drive to limited areas so that I could be less dangerous for both me and society.

I am still volunteering what I can of my life to the public. Some of my family members don't understand why I give up what is left of my energy to others. But it makes me feel good. Some people just don't understand. I don't think it is that hard to understand. It makes me feel like those family members are selfish. Is that mean to assume?

Everyone is sleeping or taking a nap now and I am actually alone, awake and cognizant to blog. I have been using the community bus. I never knew how to use it before, but it has been a blessing in disguise. I also made a great friend (bus driver), she''s such a sweetheart and has helped me on a large scale, even if it doesn't seem like it to her.

My family life is crazy. We are torn in all directions, everday. I'm not sure if this is good or bad. I am hoping that we are still having a strong family connection together.

everyday BURDENS

Here I am, staying home to get better, right? I'm not sure if I am happier or more depressed? My daughter refuses to leave my bedside thinking that I won't wake up after my naps. She is 14, this is the time she spends with her friends having fun. I keep encouraging it, but there is always something...I have filled my days with endless tasks. I try to move it around so there are days where there really isn't much going on...like today. I have a massage scheduled. Due to some unfortunate events, the carpool won't work today. So I have to rush my daughter to camp. I would ask my husband, but he has been stressed out to the tee. I did a phone interview yesterday, taking a significant pay cut, but a job nonetheless. I don't know how long I could last working. I could barely be here and I am at home. Am I asking too much for a regular life? I'm a burden to my daughter, to the point where she won't leave me alone. My husband is working more and more so that he can support us. I really hate feeling this way. I just want to go away and not think about being sick. I have another doctor's appointment tomorrow morning. I am tired of being pushed this way and that way. I am obviously just barely surviving.

disturbing...

I went to see my rheumatologist today. I haven't seen him in a long time, well longer than usual. I was given a page long of items that I need to do before I see his nurse practitioner in a month. This week alone I have two appointments scheduled. I guess I didn't think it was a big deal that I had been bleeding or having my period for two weeks. I have been bleeding for quite some time now. I haven't had a period in over four years. I thought I had gone through menopause. My rheumatologist feels that this is a second priority problem. I have a first priority problem, which seems to be hardest to talk about. I am not sure why? So I have to see a cardiologist. So I have to have a full work up of my heart. I had blood slowly drawn from my arm which was nice [because taking it from your ankles is quite painful!]. Then, comes third priority: gasterintologist [sp?]. When one thing goes away...many accumulates? I had a seizure this past weekend, on Saturday. I have been taking my medication and I just don't know what else is left to do. I have yet to tell my husband and daughter. I have requested the time off from my administrator and hope that it won't be a problem. I think that I shouldn't worry until it is a real problem, right?

Lupus Awareness

"still trying to spread lupus awareness and hopeful to be successful"

This is what I keep telling myself as I try to get any information out of my facilitator to help me move forward on trying to acquire meetings and proposed sponsorships. It is so hard to get people involved in anything these days. I just wish I had more walkers. Even with the donations I receive, still it is yet to make any difference. I want to plant a seed, water and watch it grow. But, I have yet to make that happen.

Am I just wandering around alone? But we all know I am not...but I am not sure why it is so hard to spread awareness? Lupus affects how many millions of people? We are obviously looking for answers...but no one is really willing to get out there and do it. So why should I try?

The World Lupus Day Proclamation

WHEREAS, Lupus is an autoimmune disease that can cause sever damage to the tissue and organs in the body and, in some cases, death; and
WHEREAS, more than five million people worldwide suffer from the devastating effects of this disease and each year over a hundred thousand young women, men and children are newly diagnosed with Lupus, the great majority of whom are women of childbearing age; and
WHEREAS, medical research efforts into Lupus and the discovery of safer, more effective treatments for Lupus patients are under-funded in comparison with diseases of comparable magnitude and severity; and
WHEREAS, many physicians worldwide are unaware of symptoms and health effects of Lupus, causing people with Lupus to suffer for many years before they obtain a correct diagnosis and medical treatment; and
WHEREAS, there is a deep, unmet need worldwide to educate and support individuals and families affected by Lupus; and
WHEREAS, there is an urgent need to increase awareness in communities worldwide of this debilitating impact of Lupus;
NOW, THEREFORE, BE IT RESOLVED that 10 May, 2008 is hereby designated as World Lupus Day on which Lupus organizations around the glove call for increase in public and private sector funding for medical research on Lupus, targed education programs for health professionals, patients and the public, and worldwide recognition of Lupus as significant public health issue.

Since then...

My never-ending saga continues...and I have finally heard from my nephrologist that I do not have to do the Cytoxan treatments. Yay! Finally, good news, right? As of my last post, I am finally on so many anti-seizure or just plain out seizure meds that my memory has left me. The only reason I even remembered this site was...while I was going through the pages of my daily book, I saw scribblings on the side with regard to this site. Not only did it take me a LONG time to even realize what my user name and password was, but inevitably, my life is full of days that are missing. My family has told me about my changes. My disregard for everyone else's feelings, except mine. Yes, selfish me. I hope that I can vent online for a better person, in person. If that made any sense.

In preparation...

Tomorrow is my last cytoxan treatment, hopefully for a long time. I can't even remember life prior, isn't that sad? I have made the decision and have persisted to do or say, no to testing, no to new treatment & no more of anything else. I have had it. Round-and-round, with nothing to show for it. I think I have sacrificed enough of myself to know that maybe this is where it ends. Well that kind of sounds morbid, but it wasn't meant to. I think that I have been through quite a bit. (Although, signs of a drama queen, come to mind, but who classifies enough?) Do we have to suffer many tragedies before we can actually accomodate the heading "i've endured"? Goodness, I hope not. I made my reservation for a pick up from my home to work tomorrow morning. My husband is to pick me up from work to go to the hospital. I checked with the hospital to make sure they had all orders and my room ready. I guess I have been doing this long enough to know I don't want to spend any unnecessary time at the hospital. The nurse remembered me as the "ice cap" lady. Yes, very lovely, right? Well my doctor is kind of "old-school" wherein he writes a script for my cytoxan treatment and tells them what kind of anti-nausea and how to administer the treatment, but he always asks for an ice cap and I always say "no". I have only done the ice cap once, under another nephrologist, let me tell you...it was quite the painful event. I thought having the infusion was bad enough...but to have a huge bag of ice on your head, something of preservation of hair, so your hair won't fall out. Well I've been doing cytoxan since 2004 and it is now 2007, my hair does fall out, but I still have a head of hair. It is just thinner. I have been having an emotional, so-called "melt" lately or at least I think? I am emotionally turned on small items that usually don't get a rise out of me, but lately, I have uncontrolled emotions. From simple decisions to heart-breaking ones, have been on my gut. Yea, it is that bad. I can't tell the difference of the comings and goings of anything. I feel like I keep forgetting something, but I am not sure. Like it is gonna come as a surprise. To me, everything seems to be a little bit of a surprise because I don't maintain the memory long enough to remember. I just move with the motions, my mind could be elsewhere. What does that tell you? The quality of "my" life has deteriorated to the point where I am not willing to risk anymore on. As if I didn't deal with side-effects already, then on top the emotional, the medications, etc. It just builds on you and there is only so much left in you.

blood

Who knew you could lose enough blood from a bloody nose to need a transfusion?? Apparently, that happens. I haven't been feeling too well, losing lots of blood lately to the point...well I can't move, I'm tired and just not happy. I have been in a lot of pain. More than usual. Well I guess there is no real way of explaining. But I have come to think of myself as a complainer. As I complain about my life, my pain, my short comings. What else is left?

Life is complicated by so many details. Why do I care about details? I have no idea...because most people don't. Why can't life just be simple...loving and well I don't know...

I have been unbearable lately. To my husband, my daughter, to my family. I just need a break. Money is always an issue, but I am not even thinking of that right now. I just want peace.

calmed...

I'm finally at home just resting and trying to relax. I picked up my daughter on time. Frankly, my daughter told me as I was picking her up, jumbling the cell phone, driving like a maniac and in depth conversation, saw family members on the way home and invited one of them over for dinner by sign language, all while driving, chatting on my cell, etc. I get to my daughter's boyfriend's house and apparently my skirt and shirt was disshoveled. I didn't even notice, but it was embarassing enough.

I talked to my internist yesterday...well one of them...she asked me a strange question...like do I have a weird sensation or smell or tingling...she said it is called an "ora" (sP?), but it is usually right before a seizure. I did notice that my smell has increased, I have been having a lot of headaches due to noise or smell or combination of both? I don't know. I swear I could smell it through my skin. I even taste it sometimes. I don't know if it is the Lupus or the seizures.

depressed??

This is nothing new, depression comes with the territory of having lupus. I guess I have had it for a while now...being on a whole cabinet of medications, uppers/downers/happy pills, etc. Who knew there was a pill for almost everything? I don't want to dwell on being sad...but I have made my decision to slow down on my treatment. I have decided to cut back on dosages. I just can't handle any more BAD news right now. Everytime I go to the doctor, it's always bad news. I can tell my body is deteriorating...it's like that feeling in the baground that you know that is happening, but you just ignore it. The odors from when I urinate. Sometimes when I lay down my abdomen hurts. I am not sure if it is my kidney, but it is probably. The urine isn't foaming, but it smells pretty bad. I haven't said anything. I have cancelled all of my appointments with the exception of my cytoxan therapy on Friday, July 13. Am I going to make it worse? Maybe. But I think I am willing to take that risk. My life has been fulled with so much and maybe it is my destiny. I have always been known to be a stong person. I even thought of myself as being strong [does this sound like pride?] maybe. But I am just a regular person, trying to live liife in a body that hates me. I want to be normal, but I am not. Am I so special that life has to be so difficult? I suppose.

The man i loved [or maybe thought I loved] - I finally told him last year that all these years I had reserved feelings for him. I never let him know all these years because I guess I was too ashamed. Back in the day, I knew he was right, he would treat me well and we were like peas in a pod. I think it scared me. I ran the opposite direction. The direction of my husband now. My life with my husband has been tumultous. We have been through a roller coaster of emotions. From having a child in my teen years, getting married & having lupus.

We started wtih nothing, my family rejected the fact that I had a child out of wedlock. But we did ended up getting married. I learned to love him. Although, I don't know how much he loved me. The first year we were together it was good. The second year...well he left me, for another woman. Left me alone with an infant child to raise. I had no idea what i was going to do. He was having an affair with his friend's girlfriend. A girl that I be-friended because I felt sorry for her and kind of obliged my husband to help her. And this is how I got paid back? I was very angry. I was abadoned. Something that was very common in my life is abadonment. When times got hard, I got left behind.

Just like this disease...I feel like my doctors are a step behind what I need. My body is not responding to me, not responding to my medications. My body is trying to abandon me. Why? I ask myself that question all the time. I know that I will never get an answer, but it is something I always wonder about. Will life give me a chance? Will God give me relief?

I worry too much, which could be another factor in my crazy life. Some might say I worry about things that doesn't matter. Which I know [in my head] but in my heart...it is different.

I am so lonely. You might say, how can she be lonely?? She has a family, a full house, extended family, yet I am alone. No one understands what I go through, except for other Lupus sufferers. My family has no idea. I have written various letters, in depth, in length and in detail as I can be, but no one understands. Why? Why can't I just be happy with what I have? I guess because I want more. I want relief. I want not to hurt anymore. I ask for that sleep that I desperately seek from God.

an Itch, an Allergy, a COLD!

I am at work today. Where else would I be?? Anyhow, I got up pretty early, but left the house late because of my ensemble. It just took me forever and then I couldn't find the right shoes, well you know...it was just one of those "indecisive" days.

My husband [poor thing] has been suffering from allergies [he thinks], but I think it's a cold! My daughter also has been suffering from [dunno] but has been sneezing like crazy! I am not sure if it is allergies or a cold?? How can you tell the difference? I am totally itchy today. I am about to rip my skin off. I had to wear a sweater so I couldn't touch my arms because I keep scratching. Yesterday, I took a shower and I could feel the tingling on my legs, arms & face -- itchy. Maybe I'm allergic to the soap, shampoo or lotion? Who knows. Now my sinuses are draining. Yes, lovely, huh?

I went to lunch at the grocery store to buy benadryl and realized that I should've also bought the regular bendaryl. I asked a co-worker, while she is at lunch to pick me up some. Because I don't think the benadryl - allergy and cold is cutting it. My husband called me a few minutes ago, about itching his eyes out. I just told him to go to a local grocery store and get visine and benadryl. I hope my daughter is surviving at school.

I had the hardest time figuring out a name for my lupus team that will be walking in the ALR in Denver on September 29th. I called my friends that would have catchy and creative ideas. Unfortunately I was unable to reach any of them. I was left with my daughter and -- well the name is something I wouldn't have picked, but it is kind of catchy?? I will have to get shirts made up for it too. Good thing it is still far away. I am also trying to see about sponsorship and how that will work out. I have never done this before, but they call is the "ask" letter. I want to give out information, but not too much information, you know??

Emotions

I wrote an email to my daughter one day at work because she was being so difficult when I talked to her on the phone. I encouraged her to go out and hang out with her friends and she refused. I think she was scared that my husband would be upset. But I had already talked to him about it. She spends all of her free time taking care of me, that I think she needs a break, needs to remember she is still a child or adolescent & have fun. I was practically forcing her...to the point, well we aLL got mad. She wrote me back, telling me that she was sorry for making me sick. She thinks that she made me sick?? I told her that God made me that way. Yes, it is stressed induced - but in no way has she caused my condition. It was so sad, she was sad. I guess I didn't know quite what to tell her after. But I just reassured her that it was not because of her that I was sick. I wanted to cry and just cringe. Why would my twelve year old daughter think such a thing? I love her to death and maybe overcompensated for her well being. It seems like one day she was the child, now I am the child.

Monday

Well we officially start Spring? I'm not sure, because it feels all weird to have this time change thing happen so early. I was a little late for work because I hitched a ride with an attorney & he was running late...so you know the game...it was like a domino effect. It is so beautiful outside today.
I got a call from Dr. Ginsberg about my MRI, he said it looks okay. [yea!!]. Then the downside. We don't know what the results are from the EEG [electroencephalogram], but he said that he will track them down. But the results were enough to start treatment for epilepsy. He just said that while I am away in Europe that if any thing happens that I should have my family contact his office. I changed it on my Medic - Alert stuff & now I just have to tell my daughter. I need to see a GYN right away when I return. He said that when women are going thru their menstral cycles, they have the tendency to have seizures [great, huh?]. Although, I haven't had a period since January of 2005. I just started having a period about two days ago. It is VERY heavy too. I don't want to bleed to death...but I don't want to feel like a hypochondriac for every thing, I need to call the doctor. It is a bit odd that I would be having my period...but then again...what do I know?

EEG

I never knew a test like this existed until now...but an EEG is basically like an EKG, but on your head. I went to the hospital, checked-in and sat and waited...wondering who will come to get me and where to go next. A older man in a white jacket calls out my name...I get up and walk with him down these halls to a part of the hospital that I haven't visited before [& the hospital is like my home away from home]. He asks if I need to use the restroom because the proceedure is about ninety minutes long, I won't be able to go after they attach the stuff to my head. I decide, it would be best if I tried [at least] to go. I walked into a very small bathroom, still thinking in my head, what is this test going to be like? I walk into a room, where he directs me into and sit in a lounging type of chair with a white sheet over it. He asks if I am comfortable and how I was feeling that day...then he moves on to as to why do I need such testing. I give him the details of why the doctor is ordering these tests and how he personally knows Dr. Ginsberg. I start to tell him my story of how I found out I had Lupus & how many doctors I see at the hospital, while he is using little alcohol pads and rubbing patches of my scalp, pretty hard and attaching these sensors about 22 of them, to be exact. He even puts them on my ear lobes, which really felt strange. I have to sign a few waivers about being audio/video taped during the testing. He puts blankets on me and turns off the lights, while he sits outside of this little white room that I was in, he makes me more comfortable by making my lounge chair lean all the way back, as if I am laying to take a nap. He said that they would encourage that I try to get some shut eye, but if not, just day dream...altho I had to keep my eyes closed. Well it was just like I took a nap in a very dark room. It was actually pleasant for once, except for the glue balls that I had to pick out of my hair afterwards. I still don't know what the results were and I am sure I will find out soon enough.

LFA Responds to Dr. Phil's Comments about Lupus on March 6, 2007

On Monday, March 5, Dr. Phil McGraw on his popular daytime talk show made statements about lupus which unfortunately minimized the serious and devastating consequences of the disease. The references to lupus were brief and were made in response to comments by a friend of Anna Nicole Smith, identified only as Frank, who claimed that Ms. Smith prior to her death confided that "she had a blood disorder and it was lupus."During the interview Dr Phil made the following comment: "[lupus] is an autoimmune deficiency. But it's not a life-threatening disease. It's something that is rather akin to arthritis. And it can cause very debilitating problems of the joints, heart, lungs, skin. All types of things, but it can be controlled very effectively with medication in most cases."The unconfirmed rumors attributing Anna Nicole Smith's untimely death to lupus have generated considerable interest in the disease. Unfortunately, media coverage has not properly explained the life-threatening and life-diminishing consequences of lupus. Statements made on the Dr. Phil Show which portrayed lupus as "something akin to arthritis" perpetuate the misimpression that lupus is just "aches, pains and fatigue." Lupus can be, and often is, a life-threatening and life-diminishing disease. LFA has forwarded a letter to Dr. Phil McGraw and the show's other senior executives asking that they correctly educate their audience about the devastating consequences of lupus. In its letter, the LFA offered to share stories submitted by many valiant individuals and families about how they have addressed the life altering impact of lupus, including suffering through multiple operations and hospital visits, debilitating pain and fatigue, organ failure, loss of jobs, loss of marital relationships and, in far too many cases, the loss of a loved one due to complications. In this way, Dr. Phil's audience might have the opportunity to learn about a disease that for too long has been under-recognized and misunderstood.
Send your comments to Dr. Phil @ http://www.drphil.com/plugger/respond/?plugID=9164