Back Out of Hospital AGAIN

[pebblesyowi]

Sorry all for not posting in a while. This lupus is style_emoticons/<#EMO_DIR#>/worried.gif kickin my butt. I just got out of the hospital again this weekend. My coloitis has been actin up on me and i had diaherra (lupie lang) for bout 8 days and the medicine wasn't being absorbed all. Didn't have the 40 bucks to go to the GI dr. So thrusday night at yet another meeting i had this horrible pain in my head, and my right eye started to dropp and vision changed and hearing changed and my face started to become nummb style_emoticons/<#EMO_DIR#>/aww.gif . So i rasied to the bathroom and a couple of sisters came with me. I waited for bout 15 more minutes and my husband was ready to pick me up from my meeting.

He fused and argued with me that there was nothing wrong with me style_emoticons/<#EMO_DIR#>/umm.gif . Need i not remind you i just got over 3 STROKES and having 19 seizures a day 4 weeks ago. I just completed my home theraphy and was just gonna start my out paitent theraphy this week. All of a sudden i couln't lift my right leg and half of my right arm was getting numbb. just like what happened to the left side. I knew i was having a nother stroke. My sista came to my house and took me to the emergency room cause my husband didn't want me to leave him with our daughter he was so worried about going to work and picking up his check. style_emoticons/<#EMO_DIR#>/blink.gif GO Figure. ANYWHOOO

I went to the emrgency room and they ran some test and one thing i would like to know is if anyone has an unusally small shrinking too quick brain??? They gave it a name but i never heard of it before but they also said its not a acute problem its a chronic longterm problem. style_emoticons/<#EMO_DIR#>/blink.gif like that makes it any better. style_emoticons/<#EMO_DIR#>/sigh.gif plz stop while u're ahead i thought. They transfered me to another hospital cause of my inusurance that i wish i never had. They did testing on me and even gave me a ultrasound in my neck. Once again i don't have a main artery i wasn't born with it. style_emoticons/<#EMO_DIR#>/umm.gif so i never saw a rhuemy and my rhumy had problems with his answering service and all this was happing over the weekend when he's not on call so i was up the creek without a paddle. Well the last dr. that came to see me i took the time to explain everthing to him and he was glad that i did cause he said he was very confused when he look at my chart.

My blood work was so perfect and normal but when they walked in my room and seen my physcial condition it was like they had to do a double take cause it didn't match the bloodwork. He said he want to treat me for my colotis and he thinks this is what made my lupus act up and cause stroke like symptoms.

OK either u had one or u didn't cause i don't know anyother disease that can mimic a stroke like lupus can or stroke can. i told him what the rhumy said that u won't see a blood clot cause its not that kinda stroke but he still put on my discharge papers that he rule-out stroke. So that to me is saying i didn't have one cause again they didn't see a clot. I lost 50% of my vision in my right eye and hearing and my side of my face even inside my throat. I couldn'/t swallow for 2 days. My speech is horrible again and i have to learn how to walk over again. I can use my hand but have no feeling in it.

So i take 2 steps forward and 3 steps back. I feel like my body isn't giv'n a chance to bounce back. Scared to go to sleep at night afraid i'm not gonna wake up. I'm not afraid of death it's my kids i worry about. Leavin them behind has really been on my mind. Did i also mention that next week my husband is moving out and going back to NJ. So have to deal with this and raise the kids and be well enough for them not to take them away. I tell u one thing after another but i think divorce sounds good to me cause its less stress and i'm not leaving him hes leaving me but i will be ok.

Sorry for long post hope all of you are doin better and again sorry for not posting in so long style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/wavey.gif

[helloos]

((((((((((((((Pebbles))))))))))))))))))))))

You sure are going through a rough time right now. I don't understand these docs. Did they at least help you out here and when can you get back in to see your rhemo?

You definitely need to see your rhemo and go over all of this with him. I understand your concern about your kids and your hubby leaving. It seems from your post that he is not giving you much support and maybe best that he not be with you. You deserve a whole lot more and deserve soming that is going to listen to you and be there for you. Do you have family near you that can help out with the kids when he is gone? Just remember that it is ok to ask for help if you need it. It takes much of courage to ask for help when needed.

I wish I could give you more advice of what is going on with your strokes and such but I cannot. I can only suggest that you see your rhemo immediately. It seems that he knows what he is talking about and can help you more than the ER docs.

Try to find some time for you through all of this. Don't lose yourself. Keep up your faith, keep positive, keep up with your appointments and try to find someone that can be there for you if you need the help.

My thoughts and prayers are with you.

Email me if you want to talk more or need to.
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[lazylegs]

Oh Pebbles! Sorry you are having such a rough time. I have no words of wisdom for you, but wanted you to know that you will be in my thoughts and prayers.

Take care,
Lazylegs

[Nell]

Hi Pebbles,

I come here due to sx my young daughter has.

I'm so sorry the SLE is doing SO many terribly hard things to you. I read your previous post about being in the hospital with seizures and absolutely abhorrent medical "attention". I understand you've had to move mountains to get to your current rheum. and you have just started with him.

OK my question is will this rheum. help you to draw up a plan for emergencies. Can you two come up with steps you should take if you start to have seziures/sx of stroke. At what point do you go to the ER, who do you contact to liase with ER docs. You need a continium of care!!!! Can he help you? Gosh, it seems like it can be so difficult to get this.

I hope you have extended family/supportive friends that will help you for awhile. This is too much to do alone. Its just incredible that you could be so, so sick and have normal bloodwork. Are there any programs that could help with chores etc. until you stabilize. Mabey a friend of family member could help with looking around.

I'll be hoping your rheummy can get you on to meds. that will help you stabilize.

Nell

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