Monday, June 28, 2010

I'm a Mess

Since stopping all of my main Lupus medications, my body is revolting on me and I am seriously debating going back on the medications myself without doctor approval.  I know that is a really bad idea but will have to see what the doctor says when I go for a second opinion on Friday because I am getting into bad shape.  My hips, knees and ankles are all very sore, I have sores in my nose and random blisters popping up on my body which I NEVER had in the past.  I just don't get it.  My energy level is 0 and it is difficult for me to even consider taking a shower, never mind taking care of the kids.  I'm trying so hard to maintain a normal life but I just can't and I'm getting so frustrated by it right now.

Friday, June 25, 2010

Second Opinions

I've been officially diagnosed with Lupus since 2001 but had been dealing with symptoms since 1996 so getting a diagnosis was a long time coming.  Because my primary care can not explain my chest pain she is beginning to doubt that I may even have Lupus.  My rheumatologist feels I have Lupus but doesn't know how to treat my pain right now.  I saw the pain specialist/chiro who is going to try PT but isn't 100% sure what is going on.  Because of all of this, I have decided to go for a second opinion.  I'm going next Friday to the Hospital for Special Surgery in NYC which is supposed to be the best of the best.  Maybe it will come back that I don't have Lupus but it is something else, maybe it will be Lupus but they will be able to get it under better control or maybe they will just come and tell me the same thing as the doctors out here but at least I will have tried.
I feel like I am back to the beginning in 2000 when I was battling to get some relief.  Sometimes the unknown is worse than the knowing.  At least when you know what you have, you know how to fight it but right now I don't know how to fight it or even what I am fighting.

Wednesday, June 23, 2010

Living with Pain

After seeing my doctor yesterday, they have decided that I may just have to live with the pain for now.  The prednisone is not helping and is causing more damage to my body so the only alternative is to continue to taper me off of it but live with the pain.  I can't take any narcotic for the pain because I need to take care of my children so it looks like we are going to look into alternative treatments for the pain.  I don't know what else to do and modern medicine doesn't seem to be helping me so I've made an apt with a pain managment specialist and also a naturopath that specializes in lupus patients.  I hope and pray that one of them can give me some relief.

I am very grateful though to know that they don't think the pain is causing any damage just that the pain is going to be there.  I still don't see a light at the end of the tunnel but at least I know that I will soon be off prednisone and hopefully an alternative treatment will work for my pain.  If anyone has any suggestions I would love to hear them.

Tuesday, June 22, 2010

How to get out of my funk?

Well, the good news is that my heart seems to be OK but the bad news is that they have no idea how to get me off of the prednisone which I need to get off of.  Whenever we try to taper the dose down the pain gets very severe and even right now I can hardly function as a mommy and a wife.  I need to see my primary care doctor today who is going to speak with my lupus doctor to see where to go from here but I need something to help me function. 
I can hardly take care of the kids and it makes me feel like such a failure.  I had to have the babysitter come over yesterday to watch the kids and then friends are coming over today to help out with the kids but this is getting ridiculous.  It has been 2 weeks and I'm feeling no better...I was but as the prednisone dosage drops I feel worse.  L & R are having their basic needs met but things like haircuts, laundry, housework and extras are just falling by the wayside.  They are both acting a bit crazy which I don't like at all but I am so tired and in so much pain that it is hard for me to even try to get the energy to discipline them.  This is L's last summer before kindergarten and I was so excited to have an awesome summer and now I am just a sick mess.  My husband and I are supposed to go away in less than 6 weeks just the two of us and right now I don't think I even have medical clearance to travel.
I know that I need to get out of my mental funk that I am in right now and in turn that will probably help me to feel better physically but without a light at the end of the tunnel then I'm just not sure how.   The latest talk is to just help me with pain managment because the prednisone is destryoing my body and I am fine with that but something needs to be done in order for me to function at least 75% of the way.  I just want to be the mommy, wife and friend that I know I can be without this stupid disease getting in my way!!!!

Friday, June 18, 2010

Kidneys Are Good---WooHoo

I just got my most recent bloodwork back and my kidneys are looking good which is a huge relief.  There was some concern that they were in distress but the redoing of the labs shows that they are OK.  I will need to be monitored a bit more closely to make sure that they stay in good shape but I'm so excited that at least one hurdle has passed and I don't need to worry about my kidneys.  What a great way to start the weekend off.

Thursday, June 17, 2010

Turning the corner?

I just had to share that I woke up feeling a bit stronger today and really hope and pray that this is the turn around I need to get this latest episode behind me.  I'm so excited and even though I am still very beat up feeling, I think maybe it may be the beginning of moving on. 

Wednesday, June 16, 2010

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?

Sunday, June 13, 2010

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.

Saturday, June 12, 2010

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.

Monday, June 7, 2010

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. 

Sunday, June 6, 2010

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.

Friday, June 4, 2010

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.

Tuesday, June 1, 2010

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.