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View Full Version : New to the board, but far from new to Lupus



Kokopelli
01-12-2007, 02:47 PM
Hello everyone.

My mom has been sick ever since I can remember. She was in and out of the hospital for tests and seeing every different kind of doctor to try to find out what was wrong with her. Finally after years of looking, they told her it was all in her head. Her doctor, on an off chance, just happened to run the test for Lupus. She was finally diagnosed with I was like 5 or some where in there. I'm now 33.

We've lived for my whole life knowing that my mom's Lupus was an ugly thing and that it could flare up and ruin her body and/or mind. And well, it seems to have done just that over the last 5 to 6 years.

My mom has always been a very strong and idependent person....and now, about all she can do by herself is eat and that's only with built up silverware and a scoop plate to help her.

In trying to deal with all of this on my own before, I ended up on the brink of suicide, just feeling there was no where to turn...and feeling helpless to do anything.

I was my mom's care taker for years, until she got the MRSA infection in her back. Then it was just too much. She would fall all the time, and hurt herself pretty good a few times. I wasn't strong enough to pick her up off the ground. And then once they did the surgery to get the infection removed from her back, she has been in a nursing facility ever since.

I miss the woman that was my mom, but I love this woman wearing her body just as much and in some ways maybe more. I hate to see her the way she is and while I know she's in the best place she can be, it doesn't always make it any easier to walk away and leave her there.

I would love to talk to someone who understands.

Thanks
Melissa

cryssyjojo
01-12-2007, 05:06 PM
:( Hi melissa I am really sorry to hear what you and your mother have went through. I can relate a little I been where your mother was myself. It was very hard but what made it better was having someone there that loved me so much he did everything for me, even wiped me when I went to the bathroom now that is love.I know it is tough for you as it was for my husband , But just say your prays and be there for her just as much as you can and thats what really counts, Your love can do so much love for her, And remember as hard as it is be positive, when your negative it only makes you feel worse.. Well God bless you and your Mother, I will pray for you both . May I ask your mothers name..
Your in my thuoghts....crystal

Kokopelli
01-12-2007, 08:01 PM
Thank you cryssyjojo. My mom's name is Sandy.

Today she noticed that her finger has split open a little bit. She's really scared. This is how it happened before with the fingers she had to have removed. They were just little sores and before they noticed, her tendon was showing and she had to be rushed to the hospital and lost two fingers on this same hand. At the moment, the sore is very small, but I have made her nurses aware of it and the wound care nurse will be checking it tomorrow and starting treatment to make sure it doesn't get infected or anything.

IloveHistory
01-12-2007, 11:30 PM
Hi Kokopelli!

I'm SO sorry that you and your mother are going through such a hard time! :( I will pray for both of you.

You definitely did the right thing by telling your mother's nurses about the split on her finger. I'm glad that the wound care nurse is coming to take a look at it. Please let us know how it goes; I will pray for the best.

Cryssyjojo is right. Although your mother might not always be able to let you know, she appreciates your love and care more than anything. To be honest, that's probably what she needs most right now.

Although I do not have a family member with Lupus, I, myself, have Lupus and believe me, I know exactly what it's like to be extremely ill and to have doctors telling you that your pain and suffering is all in your head! It is the most frustrating and upsetting thing; it's definitely NOT what you need to hear when you are suffering like that. One of my doctors told me that it was all psychological when I was paralysed for three days; it gave me such a shock, that I actually started to hyperventilate after leaving his rooms, which produced a gigantic Asthma attack. I have never hyperventilated like that before and I have never experienced a panic attack. I used to cry myself to sleep at night because I felt like no-one believed me. Then, I saw the most wonderful Psychiatrist who was absolutely furious with my doctors because psychologically, there's nothing wrong with me; I'm not even stressed! He ended up yelling at half of them and now, I don't really have this problem so much anymore. Don't let it get to you, Kokopelli! Show them that you are better than that and that you don't care what they have to say because you believe your mother and you know that her symptoms are real.

Keep well and let us know how everything goes. Remember, whether you need answers, support or just to vent, we're all here for you and your mother! Welcome to the Forum!

cryssyjojo
01-13-2007, 09:10 AM
Well Sandy it is great that you notice her finger and told the nurse you probly provented anything worse from happening. I'a so sorry your having such a hard time. Like I said before just be there as much as you can, know she appreciates it, your love is really what she needs right know your love and understanding.. You are a great person.. God Bless you both

cryssyjojo
01-13-2007, 09:11 AM
I'm sorry I wrote your mother's name instead of yours .

Kokopelli
01-15-2007, 05:17 PM
No problem seamonky ;)

I FINALLY got one of her nurses to take care of her finger last night! The wound care nurse didn't come and look at it this weekend and I suspect that she got off work before my mom got back from dialysis. It looks good though and I will be call tomorrow to get them rolling on a care plan for it - even if it's just to give my mom (and I) piece of mind knowing that there will be no infection.

She called me tonight and tried to get me to bring her some chicken McNuggets...which I would've done if I had worked today. Monday is not one of my days to go and be with her. I try to stick to the schedule I set up. I was going to see her everyday when she first got out here to Ohio, but it was starting to cause problems at home, so I set up schedule. I spoil her and I know I do...but if there is anyone on the face of the earth who deserves to be spoiled, it's her!!! But I didn't give in to her tonight, I told her I would bring her dinner tomorrow and told her to have them fix her a grilled cheese or something if she didn't like the dinner. I always feel guilty about not going - but if I don't stick to my guns, then she would have me there everyday again. I hate telling her no. :cry:

littlered
01-16-2007, 09:56 AM
She probably hated telling you no, too, when you were younger. But you do have to have a life of your own. You sound like a marvelous daughter! (I am estranged from my daughter, though not of my choosing--she is an alcoholic and when she is sober and straight, I see her and hear from her. When she's bingeing I don't. It's hard, but I have learned to accept that all I can do is love her and welcome her with open arms when I do have her in my life.) I like it that you see her regularly on scheduled days. It gives you space to do what you need to do, and at the same time, it gives her something to look forward to. Hang in there--Kathy

Kokopelli
01-16-2007, 02:46 PM
See cryssyjojo, I used the wrong name too...LOL ooppps!

Thanks Kathy. I am sorry to hear about your daughter. And while I can't relate to a daughter being lost to alcohol, I can relate to losing a brother to drugs and alcohol. No one has seen or heard from my brother in over 15 years.

I'm taking mom her chicken nuggets tonight, so she'll be happy. We will hang out and watch Walker Texas Ranger and MASH. And she goes to bed around 7-7:30 now. It's gotten earlier within the last couple of months.

Hugs to you all.
Melissa

cryssyjojo
01-16-2007, 04:48 PM
I guess under my name it says seamonkey althuogh I'm not sure why..