Need to vent

lola28

It's been one of those days, the kind that make you wish you never got up in the morning. As many of you know my younger sister has Lupus and had to go on meds late last year thankfully she has gotten much better these past few months, but it seems that there's always a trade off, we get good news only to be hit by bad news. A few weeks ago she went to her doctor for a check up and they did a few tests, late last week they called me because they had some bad news, there was sugar in her urine and her blood, it seems that this is a result of the steroids that she is on for the Lupus.

Things got worse this morning and we had to go to the hospital, they did even more tests and sure enough her body is not producing insulin and we all know what that means. So here we are in the hospital again and I just want to cry, because I'm sick an tired of hospitals, I can't stand them, to make things worse they send us to a floor that has kids in physical rehab an it was just too much for me to see all these children in pain ( I saw one little boy without an arm, a kid on a wheel chair that had really bad burns) and I just got up, went to the bathroom and cried. My sister had a heart problem as a baby and I can't count how many nights I spent in the ER with her, I was only 11 but I made it a point to learn everything about her condition and I knew even at 11 that everything would turn out ok. She had her operation for her heart condition and I thought that the worst was behind us and then last year we get hit with the news that she has Lupus. I used to be sure that everything would be okay but now I'm not, I'm afraid and I'm tired of having to go to hospitals, I'm just so tired.

I think today was the first time I've cried because I felt sorry for myself, how selfish is that? I'm sitting in a waiting room full of children that are really sick, and here I am crying and feeling sorry for myself. How horrible of a person am I for feeling this way when there are others that have it so much worse than me?

Lola

RichieRich

Lola,

I feel for you.

I'm so sorry to hear that your sister is again in the hospital. But it sounds like your sister is a real trooper. She beat her heart condition, then went on to show lupus who's boss, and I'm sure she's taking on this new challenge very aggressively.

I bet that's something she learned from having a strong, confident, determined older sister like you.

I know the anxiety seems unbearable, but remember that its not your job to help the whole world right now, you just need to be there for your little sister.

Please, take care of yourself too, and let us all know what we can do to help.

Richie

bigmouth

Lola, crying because of empathising with anothers pain is not selfish. The emotion you feel is expressed on their behalf. Conversely, lack of emotion would show you as cold and unfeeling.

Jesus cried on learning of Lazarus death. Nothing selfish there.

cognizant dissident

Hi Lola

I have Lupus too. One day, I can be feeling fine and making lots of plans for the future. The next day, my meds don't seem to work, my ankles swell up like little balloons and I'm wondering if I have kidney damage from the Lupus or the Lupus meds. A few days later, I seem fine again. The one thing about Lupus is, you really have to take it one day at a time, because you don't know what tomorrow will bring.

I find it helpful to meditate, to stay in the present moment, not to look into the future and think of all the worst case scenarios possible. Also, not to get too attached to my plans or the outcomes. Lupus has taught me to try to find the joy in the present moment. Even when I was in a lot of pain, I found joy and comfort in the love and caring of compassionate people around me.

You are not selfish. You cry and are in pain because you have love and compassion for your sister and also for those other children who you saw, complete strangers, yet you felt for them. I have a mixed feeling for hospitals too. I was studying to be a nurse when I came down with Lupus. I hate going to hospitals too. The thing is, you meet the most amazing people there. Caring, compassionate, courageous. I'm talking about the staff, the patients, and the families who visit. These qualities tend to be contagious and rub off those touched by them. So, you usually come out better than when you went in.

Take it one day at a time. Don't forget to rest and take a break when you need it. Nothing will be gained from letting yourself sick or run down. If you need a break from the hospital and sick kids, take it. No guilt. You have to take care of yourself first before you have anything to give to others.

Hope this helps. Keep us posted on how your little sis is doing. You are an awesome sister!

Cog

Crumpet

Honey, stop you will make me cry - and I can't loads of work to do!

Dont beat yourself up because you are touched by the plight of your sister and the children in the ward. Its a good thing to be touched, not selfish. If you want to stop feeling bad you have to go do something positive - like go buy some lollipops or fruit and distribute it in the kids ward and get some smiles back at you. This will probably make you cry too, but in a good way!

deeskis

Hi Sweet girl

your sis can get through this and so can you. I know it's not fair. Get some time out, have a good rest and then go be there for her again. I'm a Diabetes Educator, and once her sugars are under control she should start feeling much better than before.

(((hugs))) to you both,

D

Vernon Williams

Lola,

Even though I do not know you, be assurred of a long distance hug from MO from my family.

I have a long time neighbor that has lupus. It has been a battle. He is a Roman Catholic and as close to a Saint as I will know. He is always positive and upbeat. Yet, as "gutsy" and loving as he is, the condition has caused a great deal of suffering. I have empathy for your situation.

Our oldest daughter, Heather, had a condition called "Severe Infant Hypoglycemia." The result was the removal of ninety percent of her pancreas. We have spent so many months in hospitals. Nothing will exhaust a person more than trying to rest in the bright lights and uncomfortable chairs of waiting rooms.

I wish you strength and patience. I am going to add you to my prayer list for these things.

Yours in this Journey,

V

Vernon Williams

Oh, and, Crumpet is right....

Buy the kids some little something and pass it out.....or chat with thier parents a bit and let them vent...reach out: by letting them draw refreshing water from your "well" then fresh water will flow into you to fill that void. Funny thing.....it works.

Hang tough,

V

Sunspot

We had sole custody of a handicapped grandson from five months of age (now 18), and spent every spare "day off" in hospitals, labs and doctor's offices (eleven doctors before we got a diagnosis) and many more after the diagnosis was decided upon. It DOES wear on you after a while, especially when you are a senstive and caring person to start with.

Crying is often a release, and can get frazzled nerves and raw emotions back into perspective again. Don't be ashamed OR feel guilty about shedding some tears.

Vernon Williams....I don't remember seeing you post before....but what a sweet person YOU are to think of what you did....and what a terrific suggestion!

hugs,

Annie

lola28

Cog- I feel for you, I've seen what Lupus does to a person and I don't know how Lupus patients deal with the illness and with effects of the medication ( Prednisone does horrible things to a person). I wish there was a way to make it go away for you and for the millions of men and women that have to contend with the illness.

Well things are better this morning, i gave her an insulin shot this morning and I'm glad to report that I did not muck it up. The good news here is that the doctors feel that once she gets off the steroids her body will begin to produce insulin again and she will be able to come off the insulin, but until that happens I will have to continue to give her the shots.

Deeskis- yesterday I completed a seven hours of diabetes training, I even got a nifty certificate, yay me!

Vernon- Thank you for your kind words, and welcome to the board.

Sunspot- I know you are dealing with some health issues yourself, I'll send good vibes your way.

Crumpyyyyy- hugs.

Lola

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