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NoodleMom
12-28-2008, 02:54 PM
Im 48 years old. In my heart I dont feel old but my body says differently. I need physical help to take a shower. There are so many things that I am not physically able to do. I take so many hands full of pills each day just so that I can do what? Sit in my bed watching movies that I cant even remember later. My mind is failing. I feel like I have Alzheimers the way I lose words and complete thoughts.Mentally I feel like my brain/mind is swiss cheese.

Arent these are characteristic of a person who is getting old? That was what I thought. When a person becomes elderly that is the time that they are to be taken care of. Not at 48. I feel like my body and mind are failing like an old person who is going to die. Im going to be like this forever. I dont want this.

Why am I here? What do I do in my life that means anything anymore? I feel like baggage. My heart hurts for my family that this is what they have to deal with. I hurt for what my life is.

Kasey

rob
12-28-2008, 05:21 PM
Hi Kasey,

I feel the same way that you do most of the time. I'm 40 and I have to have my 72 year old father help me with more and more things lately. It should be the other way around. My cognitive skills have steadily been in decline for a few years now, enough for people to notice. I'm very much a kid at heart, yet I feel like I'm 80. I was always the guy who people came to for answers, or to proof read a paper, or to answer some involved technical question about something. It always made me feel good when my mother would ask me just how in the heck I knew so much, about so many things.

Now, those questions are usually met with a blank stare from me, and a look from people that says "he was so sharp, he had so much potential, too bad". I get sad, I get angry and bitter, and I get frustated beyond belief pretty much every day. But, there has to be some sort of reason why you, or I are here. Each day I try to do things for other people that are still within my capabilities. Even if they are just little things. If I can talk to, and help someone here, or in my daily life, it helps me to feel like I still have a purpose, a reason for being.

You say you feel like baggage. I know the feeling. But I would be willing to bet that most people in your life do not see you that way. Your life means alot to many people, and you make a positive difference in many peoples lives. I've read enough of your posts over the past months to get a good idea what sort of person you are, and I believe what I am saying is true. I wish I had some magic wand to make everything better for you, and me, and others like us. Unfortunately, there is no such thing. As damaged as we all are both physically, and mentally from this disease, we are still worth something. It's finding that worth every day that can be so difficult. And on the days where that self worth is nowhere in sight, we turn to others for support. Some of us can find that support in our everyday lives, and some of us only find it here, but know that the support is there Kasey, and that your life matters to many people, even if today, you cannot see it.

Rob

sits_inthe_corner
12-30-2008, 04:43 AM
Gentle hugs to ya NoodleMom

I'm 48 yrs old as well.

Last year I needed help to get in and out of the shower. Doing the launder was scarey :shock:

Emptying the garbag can was torture.

I would cry and cry to think, "If I'm like this now...what's the point...is this only going to get worse...is this my life now?"

Well it wasn't.

That's not to say I don't have painful days now and then....but it's now and then.

The only thing I can suggest is go back to your doctor and let them know how limited you feel. Let them know how this is affecting you, and ask if there's something else you do to help bring back some of the independence and lessen the pain.

What medications are you on and how long have you been on them?

A year ago, I had no idea that I would have regained as much as I have. I'm praying that it continues and that it can be the same for you.

Hugs

NoodleMom
12-30-2008, 09:17 AM
I am on plaquenil, gabapentin, protonix, synthroid, metformin, insulin, hyoscyamine, probiotic, cymbalta, welbutrin, ambien.

KathyW1958
12-30-2008, 09:59 AM
Hi Kasey,
I am wondering have you been tested for Pernicious Anemia? I know that right before I got diagnosed with that, I seriously thought that I had Alzheimers Disease and that scared me to no end. I just turned 50. I hate Lupus, because of all the problems that it causes, but I think that they should at least test you for it. I hope that you get to feeling better.

Hugs,
Kathy

Danica01
01-02-2009, 01:02 AM
I know how you all feel :( I am 29 and feel like I am in my 60's! The aching and cracking when I walk is horrible and sometimes I have to take a shower sitting down. The doctor said I have the lung capacity of a 78 year old, whatever that means :cry: I am sending you warm thoughts and gentle hugs tonight :angel:

SassyAuburn
01-03-2009, 07:50 PM
Well, I guess the fact I am married to a younger man and I still feel younger than him helps me somewhat. Although, being at different doctors at least twice a week makes me just think EVERYONE feels like me... young and old! The majority of people I see in the course of a day creek, pop and crack too.

I'm 42. My bones feel 50 but my mind feels 30. That is when the lupus fog hasn't rolled in and stopped my mind from remembering what 30 actually felt like. I tell myself each morning I just have to get up. It hurts, it makes me cry sometimes, it's frustrating that I feel that way again, it pisses me off that it's my mother's side of the family that has the immune problems, and I'm bitter that my sister passed due to MS and my mom is in a nursing home because of health problems and... even with all the pain I'm in... I am the one who has to do everything. For so long, I just said, "I just want to be left alone and rest... and sleep... and ignore everyone... and make people do everything themselves."

And that's exactly what I did for the past 6 months.

Does that make me selfish? Some might say yes. But what I think is it makes me is healthier than I was before. And that does wonders for the age of the mind and the heart.

When I finally pull myself up each day, I make sure I do a few things:
1. Do my hair
2. ALWAYS put on my makeup--makes me feel pretty!
3. ALWAYS put on lotion and perfume--makes me feel sexy!
4. ALWAYS drink a glass of water right after I get up--makes me feel less pastey
5. Watch something funny on TV so I can laugh
6. Tell my husband I love him because he has to put up with my old sorry ass every day! Ha ha.

So often, when I was in sales, we were told, "Attitude Is Everything". Then, I thought it was a crock of crap. Now? It's my attitude that keeps me going day after day. (Well, the Motrin and the Prednisone doesn't hurt either.)

Stay strong everyone!

DrinkofWtr
01-14-2009, 09:30 AM
Dear Sassy Auburn:

I'm with you. I truly believe having a significant other who is younger than me, helps to keep me young. Besides, everyone thinks I am much younger than I really am. I, too, put on my make up, fix my hair, am fussy about how my clothes look, and use my lotions and potions.

It has been a blow to me that I can't work much anymore, but I am looking forward to pretty much retiring in the next year. I look forward to taking a few classes, pursuing some hobbies, and trying to do some things that I enjoy, Lupus permitting.

SassyAuburn
01-14-2009, 03:39 PM
DrinkofWtr... (love your name)

"Lotions and Potions". LOVE THAT! I may just have to use that little bugger on my beauty blog soon.

Today, I had to go to my rheumy for my 2 mo. check up. It was blood test time. I have been on plaquenil for 6 months and he wanted to see how things were. I left his office feeling very frustrated (I had lost 6 lbs which is not good for me...keeping weight on is a problem) and he's concerned that maybe the lupus is effecting my stomach somehow. Then I had 7 vials of blood drawn from my skinny body, and I then had to battle 15 below windchills so I could go to the market and buy ice cream (ugh!) and protein powder to add on a couple of lbs. Even feeling as blah as I did, I made sure my lipstick looked nice, eyes were done, posture was straight and smile was on my face. As I left the market, the nice greeter at the door asked me how I was doing, and I said "Really good, thank you." His reply? "Well, you sure look good and your pretty face and smile just made my day." Wow. He just made mine too.

I too am no longer working. In fact, my disability claim was approved a month ago and my back-pay benefits check came today (praise the Lord!). I find that getting up, putting myself together and doing whatever errands I need to do is my "job" and staying healthy is my lifetime career. Boosting my self esteem helps me get thru whatever needs to be done, with or without lupus symptoms that day.

Stay "young" DrinkofWtr... and if you want to check out my glamour-junkie blog, pop in... www.sassyauburn.wordpress.com It's all for fun!

NoodleMom
01-14-2009, 04:43 PM
Im glad you guys can do all that you do to look good. People always used to say that I look so young. In fact they thought that my oldest daughter and were sisters. She is 25. Oh to be young and healthy looking again.

I feel like sh*t. Look like it too. Sorry for my lang. I just cant keep it inside of me sometimes.

K

sits_inthe_corner
01-14-2009, 05:24 PM
Hugs NoodleMom,

I understand. Sometimes I feel like I'm 80 yrs old. If I feel this good now, just wait a few years :P

It's hard to keep your spirts up somedays. But then I'll see someone or read about someone who has it much much worse and I feel ashamed of myself. But I don't discount how I'm feeling. It's valid, it sucks feeling like your 80 when you're in your 40's.

I'm trying to age "gracefully" if only my body would co operate.

Gentle hugs to ya.

Danica01
01-15-2009, 01:57 AM
You are not selfish at all! You have a lot on your plate and anyone in your shoes would feel the same way you do. Just take a moment to breathe! I am so happy you have been taking your life back over the last six months! What I love the most is your daily routine.......it is amazing how a few little things like make up and lotion can make us actually feel better and a bit normal. Keep it up and I think I may try out your routine!

By the way, I am going to try to go on disability. How long did it take you to get approved? Did you have to hire an attorney? Do you have any advice when it comes to the process? Thanks for sharing your story!



Well, I guess the fact I am married to a younger man and I still feel younger than him helps me somewhat. Although, being at different doctors at least twice a week makes me just think EVERYONE feels like me... young and old! The majority of people I see in the course of a day creek, pop and crack too.

I'm 42. My bones feel 50 but my mind feels 30. That is when the lupus fog hasn't rolled in and stopped my mind from remembering what 30 actually felt like. I tell myself each morning I just have to get up. It hurts, it makes me cry sometimes, it's frustrating that I feel that way again, it pisses me off that it's my mother's side of the family that has the immune problems, and I'm bitter that my sister passed due to MS and my mom is in a nursing home because of health problems and... even with all the pain I'm in... I am the one who has to do everything. For so long, I just said, "I just want to be left alone and rest... and sleep... and ignore everyone... and make people do everything themselves."

And that's exactly what I did for the past 6 months.

Does that make me selfish? Some might say yes. But what I think is it makes me is healthier than I was before. And that does wonders for the age of the mind and the heart.

When I finally pull myself up each day, I make sure I do a few things:
1. Do my hair
2. ALWAYS put on my makeup--makes me feel pretty!
3. ALWAYS put on lotion and perfume--makes me feel sexy!
4. ALWAYS drink a glass of water right after I get up--makes me feel less pastey
5. Watch something funny on TV so I can laugh
6. Tell my husband I love him because he has to put up with my old sorry *Horse's Patoot* every day! Ha ha.

So often, when I was in sales, we were told, "Attitude Is Everything". Then, I thought it was a crock of crap. Now? It's my attitude that keeps me going day after day. (Well, the Motrin and the Prednisone doesn't hurt either.)

Stay strong everyone!

NoodleMom
01-15-2009, 09:53 AM
I was wondering who you were talking to because I dont really have a routine and I definitely do not wear makeup. I cant even dry my own hair or put a shirt on by myself let alone do makeup.

SassyAuburn
01-15-2009, 09:58 AM
Danica,

I sent you a private message regarding my disability process. It's kind of long which is why I didn't post it here in this forum. If anyone would like me to post it elsewhere or want to know how I went about it, just let me know.

I hope you start your "Pretty me time" soon! It's almost like playing dress up but by yourself. There is no reason, no matter how much you hurt, that you can't do something for yourself to make yourself smile. There are days, like today, when I have no desire to get out of bed. My feet and knees are killing me, I have a slight temp, and a headache from hell starting. But I'm still going to sit here, give myself a manicure with a nail color named, "I'm With Brad" and read my fashion rag-mags!

Contact me anytime....
Be happy, be healthy, and smile (it makes people wonder what you are up to!)
Hugs, Sassy

sits_inthe_corner
01-15-2009, 05:06 PM
K someone really needs to envent a makeup/hair devise. You select your settings and stick your head in.....and POOF Angelina move OVER...you're good to go.

Saysusie
01-15-2009, 09:24 PM
There was a device something like that in the movie "The Fifth Element". She put the device on her face and..poof...complete make-up job! I thought that was great and how I wish I had one!! :lol:

Peace and Blessings
Saysusie

NoodleMom
01-16-2009, 08:31 AM
Thanks for the smiles sits and saysusie.