How do I deal with this one?

I'm still having some major problems with my heart and possibly kidneys (hoping it was a lab error) so have been seeing doctors basically on a daily basis which is getting tiring but also making miserable because I keep getting bad news.  I'm really at a point that I can't take care of my kids properly which really makes me mad.  I've had to depend on friends, my parents and our babysitter....which for me is really a lot of dependency and makes me feel like such an invalid but there isn't anything I can do about that right now.
Anyways, when I went to see my doctor on Monday she informed me that my Lupus is now considered severe and that my life expectancy is shorter than it should be.  I understand it is important to be upfront but to tell a 34 year old mother and wife it really took me by surprise.  Because of this, they have taken me off of all of the "high risk meds" since they aren't working and have just left me on super high doses of prednisone until I see the cardiologist and the kidney results come back next week.   I plan on fighting this and know that I will probably end up back on a high risk med but until then I'm stuck in limbo and the bad news better turn around to good news soon.
I feel guilty for all of my friends and family who have to deal with this.  My 81 year old grandmother is fighting cancer so I feel guilty that my mom has to worry about both of us.  My husband's best friend is still not doing well so I worry about the stress of all of this on him.  My kids are so young but old enough to know that something isn't right with mommy which makes it even harder.  I just don't know how to wrap my head/heart around all of this especially since I still feel so lousy.  I guess it will all work out in the end but being in limbo really sucks!!!!!  I'm really trying to convince my body to listen to my head and heal itself but so far it isn't working but positive thinking never killed anyone so it is worth a shot, right?

Freedom for my kids

While I was in the hospital, my husband did everything he could to keep the house under control but now that I am back, I am learning some of the things that happened while I was gone.  This is in no way a critism against him at all but things that made me laugh and shows what truly is important in life.

1.  Not a single bathroom had toilet paper in it, everyone used tissues
2.  My children had not been bathed from Monday night until Sunday morning, when I forced him to bathe them.
3.  I'm lucky if there teeth were brushed once a day
4.  I have forts all over my house
5.  My husband has taught them some games that I would never in a million years have thought of but they truly love to play now.
6.  Both of my children are in pre-K but neither of them made it to school the entire week I was gone.
7.  My 5 year old daughter did her hair by herself because Daddy just couldn't figure it out.
8.  I don't think a fruit or vegetable wasn't eaten the entire time I was gone
9.  Daddy brought out toys like their bounce house and power wheels to play with which usually don't get brought out by me
10.  They all survived and are no worse for it.  They may be a bit clingier and cuddlier but that is OK with me.

I'm very blessed to have such a great husband who ran around like a maniac cleaning up the best he could so that I wouldn't be stressed out when I got home from the hospital but also to have such a loving, caring father to our children.

Just out of hospital

Well, my body couldn't fight what was going on and I just spent the past 4 days in the hosptial dealing with pericarditis or mild congestive heart failure.  My ekg and echo was showing inconclusive data so I need to followup with a cardiologist in a week.  In the meantime, I am on my heavy duty prednisone and hoping that the oral prednisone is enough to keep me out of the hospital.  Along with that, my hepatic function is a bit off so I need to followup with my rheumatologist on Tuesday.  I really hope that everything turns out as minor as it can be.  My poor little kids seem to be bouncing back as best as they can.  My 4 year old is definitely a bit clingier than normal but that is OK while my 5 year old seems to be doing fine now that I am home.
My poor husband is still a nervous wreck especially since his best friend is still in the hosptial so combining that with me being on the cardiac floor has made him a bit neurotic.  Once again, my wonderful friends came through for me and my family.  I hope one day that I can repay them for all that they have done for me.  I truly am blessed with wonderful friends and family.

Please let my body fight this.

Well, after a few weeks of feeling great, I feel like I am going down a slippery slope again.  I woke with a sore throat last week and figured I was getting a cold but unfortunately today, I woke with shortness of breath and chest pain.  I really hope that my body can fight this off.  I'm assuming that it is related to the cold but will probably know for sure by tomorrow and then I will either need to call the doctor or let it run its course.  I'm so upset because I was feeling good and really getting some great family time and now all I can do today is sit and watch the kids play. 

Here we go again

As you read in my last post, a dear friend of mine and my husband's best friend suffered a massive heart attack last week.  My husband really wanted to be close to her family to help out as much as we could so we took the 5 hour drive up to visit them.  While there, we found out that she was found unconscience and then suffered a massive heart attack in the ambulance.  They are not sure what caused it but she does have some brain damage and her organs are in really bad shape.  C was not able to visit with her because of her current status so we went over to her house and had our children play with her daughter for 3-4 hours.  This was great for her daughter but it now has my children fearful that something is going to happen to me.
They know that I am not healthy and to hear that another mommy is in the hospital really scares my daughter.  I hadn't really had to deal with all of the questions lately because I have been stable but they are all back now and I am trying to be as delicate as possible with her while still being honest.  It is so difficult sometimes to know what to say and what not to say at their ages; they are 4 & 5.  Our friend's daughter is only 2 so she misses mommy but doesn't understand what is going on.  I'm not sure which is worse for a child but am so greatful that they are so resilient.

Again, please keep our friend and her family in your thoughts and prayers as they can definitely use them.  Thank you.

Prayers for a dear friend

I am asking everyone to please keep my dear friend Melissa in your thoughts in prayers.  She is the wife and mother of a beautiful little girl.  Melissa suffered a massive heart attack a few days ago and is in critical condition.  Her little girl needs her to pull through as does the rest of her family and friends.

Awesome Weekend

I don't often take the time to write about the good things that happen in my life so I wanted to take the opportunity now.  My family and I had a truly amazing Memorial Day weekend and I am so thankful for that.  About a month ago, my husband and I decided to buy a boat to use on the Great South Bay of Long Island.  My husband grew up on boats and the water, where I grew up about 2 hours from the nearest shoreline so I was a bit apprehensive about buying the boat but it has probably been the best investment we have ever made.  On Saturday the waters were rough so we didn't go out but on Sunday we took the kids to see an airshow with some friends via the boat.  We were on the water from 7am to about 5:30pm and had such a good time.  The Blue Angels flew overhead and my son was in heaven.  Our boat was tied up to our friends boat and we had so much fun talking with them and the kids were going between the boats.  On Monday we figured we would go out for a few hours and ended up being out for 6 hours but it was the most relaxing 6 hours of my life.  This boat is bringing my family back together again; no blackberry, computers, phone or TV, just us.
I was in the sun for all of this time so I kept applying sunscreen in the hopes of protecting myself and I'm not sure that it will work but I was willing to risk it to have such quality time together.  I'm hoping/praying that it will not activate a Lupus flare but to be honest it was sooooooo worth it to me for this weekend.  I will take it very easy this week and not feel guilty about it because of all of the stuff we did this weekend.