Tuesday, March 30, 2010

Please don't let me go bald!!

I have naturally thin hair to begin with but recently it has been getting even thinner and now I have blisters along my hair line and in my hair.  This could be really bad news for my poor hair.  When I was 22 I had a completely bald area in my scalp and then last summer my hair was so thin that I had to wear a wig and I am terriefied that it is going to happen again.  If it does then I will deal with it but I would much prefer to not have to worry about it, especially in the summer.
I know that out of all of the places the lupus could attack, my hair isn't that bad, but for me it is devastating.  I always find that when I do my hair and makeup, I feel better.   To be forced to worry about loosing my hair again really bothers me.  I guess it is time to make a phone call to the dermatologist to see what he says.

Mommy, come play with us!

My two children generally play together very nicely but every so often I hear the words..."Mommy, please come play with us"...to be honest usually I tell them that I will be there in a minute and then they go back to playing with each other and I forget.  I am often too tired to play with them and I am very fortunate that they have each other as it is like a built-in playdate.  Instead, I often take them to other playdates or to fun places like playgrounds, the mall, the movies, restaurants and that sort of thing.  It is much easier for me to take them somewhere then stay home so I do that more often. 
However, I worry that they are going to look back on their childhood and remember that mommy hardly ever played with them.  I don't mind playing games, building things and coloring but playing the imaginary games really tires me out.  It seems counter-intuitive but it is so much easier to take them out.  I really hope that they don't feel like they are missing out on mommy because I am just too tired to play at times.
I really want to be the best mommy that I can be but sometimes, like today, I feel like my best just isn't good enough.

Monday, March 29, 2010

I better be healthy this summer

I just booked a trip to Martha's Vineyard with my best friend and her children and my husband and I are going to St. Lucia for a week also.  I'm so looking forward to this summer and I am scared out of my mind that I am not going to be healthy enough to enjoy it and that I will need to cancel one of my trips.  I'm feeling pretty good right now so I am really excited to start living again after what has seemed like an eternity but it is always in the back of my head as to how long it is going to last.    I believe that my liver is finally back to normal which is awesome.  I will need to be monitored but at least I am out of the danger zone and can actually have a drink if I want one.  I'm not a major drinker but since I was told no alcohol because of my liver, I have been craving a nice frosty beverage....I'm sure the fact that summer is coming is helping that craving.
Well, anyways, I'm babbling now but I'm just so excited to be feeling better and looking forward to what could be an awesome summer.  Lupus, you better stay quiet or I am going to be pissed!!!

Sunday, March 28, 2010

Your thoughts please...

I've recently launched my website, http://www.ihaveachronicdisease.com/, and would love some feedback from everyone regarding the site.  Please give me the good, bad and the ugly.  I'd really love to get the message board going with people that have some of the diseases as I think it can be very therapeutic.  Another thing that I would love is to have other people's blogs on the site.  If you are interested in any of this please contact me or leave me a comment here.

Thanks so much.  My major goal is to take what I have been given in life and hopefully help someone else with my experiences.

Saturday, March 27, 2010

Obsession or healthy curiousity?

Where do I draw the line between curiousity and an obsession?  My kids seem to be completely engrossed in the idea of heaven and dying.  We are not an overly religious family but do believe in heaven and God and the kids know that when you die your soul goes to heaven but they seem so obsessed with it.  I had a 10 minute conversation with my son yesterday about dying and becoming angels and going to heaven.  they don't seem to have any fear of it just a major curiousity with it.
I worry that they are so curious about it because I am sick.  A friend's grandmother passed away due to cancer so they know if you get really sick you may die and I worry that they are so curious about it because they know that I am sick.  Again, they don't seem afraid of it at all.  I worry about it just because they bring it up at least 1 or 2 times a day.  Anyone else out there with kids that are obsessed with heaven and dying?  When do you begin to worry about the line between curiousity and obsession?

Monday, March 22, 2010

Lupus Survey

Please take their survey about living with Lupus.  The more information we gain about this disease the more likely we will be to find a cure.


Saturday, March 20, 2010

Being a Burden

Well, I was once again diagnosed with pericarditis but at least this time I am not in the hospital for it since I think we caught it early enough. 
There is something that my husband said that really bothers me.  C and I tell each other everything and we really don't keep secrets from each other so I know that he didn't mean this is a negative way but it has really gotten me thinking. 
He was talking to an aquaintance who is very religious and who has been trying to get C to go to church with him now for awhile.  This aquaintance feels that C needs to go so that the church community can help him with this heavy burden that he is carrying.  Can you guess what that burden is????  Yup, it's me.  It absolutely breaks my heart to think that I am a burden on C.  That was one of my big fears that I had when we were engaged was that I was going to be a burden.
Am I a burden on my family?  When I look deep down inside of me, I don't think that I am.  I think that I am a very productive member of this family aside from when I have surgery or something like pericarditis which kicks my butt. 
Would our family be better without me?  I don't think so but we would all be better without the Lupus but unfortunatley, I can't change this right now.   
Should I be worried what other people think about me?  In my head, I know that I should just worry about what my family and loved ones think but in my heart I do worry about what everyone thinks.  I know this aquaintance is just trying to help C, but to call me a burden really hurts. 
I don't think anyone that is sick is a burden or would choose to be a drain on their family and friends.  Sometimes we just can't help it and need a little extra help but when we can help out we are there for anyone and always do the most that we can.  Often times, I am not asked to help out because friends don't want to add stress to me, so in those cases I usually just find another way to help out and just do it;)

Please, until you live in my family with me, while I live with a chronic illness, don't ever begin to assume that you know what I can or can't do.  For all you knnow, I may be one of the most productive people of society no matter how I feel .  So, please, I beg of you, don't ever call me a burden.

Friday, March 19, 2010

Please Tell Me This Isn't Happening

As I posted last night, I had pain in my right side and now I have pain in my chest.  This is a lovely little pain that whenever I lay down or sit back it hurts and it gets tough to breathe.  In the back of my head, I know that it is probably pericarditis again but am hoping by morning it is better.  I was doing so good with my lupus and feel like I have been whacked in the head by this. 
I wish I knew what caused this and the only thing I can think of is the elimination diet that I was put on.  This is a pretty severe diet and I'm wondering if it was too much for my body to handle all at once and sent it into a flare.  I'm going to be pretty pissed off if that is the case but like most things will Lupus, I will probably never know what is causing this flare. 
Hopefully tomorrow will bring a better day.

Thursday, March 18, 2010

Now What?!

It is 2:38 am and I sit here blogging on the computer because I have a pain in my side that is absolutely killing me.  It woke me from my sleep and I'm hoping the 2 tyelnol I just took will kick in soon and help it out so I can go back to bed.  Why can't I just feel good for more than a week?!  I was just getting back to a good place after the surgery and complications and now this.  I'm sure it is just a pulled muscle but it hurts like he!!.
Now, I am going to have to explain to the kids why mommy has yet another booboo and can't run around and play.  Why am I so fragile and why does my body hate me so much?  I'm trying to be good to it and seeing a nutritionist to eat the right things and trying accupuncture to help; yet it keeps betraying me.  I feel like I am so much older than I really am.  What is it going to be like when I actually get older?  Maybe by then I will feel great.  One can home, right?

Wednesday, March 17, 2010

My story

Each month the Lupus Alliance of America posts a different person's story and this month my story is up.  If anyone is interested in reading it the link is http://www.lupusli.org/content.asp?id=356  There is also a link there that other people can share their stories.  I think it is really important for all of us to share our stories so that other people with Lupus don't feel so alone. 
There have been many times that I have felt so alone and have gone to support groups but just didn't feel like I fit in so joining message boards and reading other's stories helped me so much.  Now it is my turn to reciprocate.

Tuesday, March 16, 2010

Lupus Advocacy Day

Today is Lupus Advocacy day. On Capitol Hill today many Lupus patients and Doctors are fighting for Lupus funding. If you could all take a minute and contact your congressmen to help in the fight that would be great. Here is a link that makes it very easy to contact your congressmen and I really hope that you will help with Lupus Advocacy just like I did. It literally took me 1 minute to do this.


Monday, March 15, 2010

Loving people while they are here on earth

I just found out that one of my best friends lost her mom yesterday evening and I feel so bad for her.  I can't imagine what it would be like to loose my mom and I'm sure that I would be inconsoloble with my grief.  This got me thinking that I really need to let the people I love know that I love them every day.  Life is so short and can change in an instant without notice.  My friend's mom went to sleep and never woke back up which is so scary since there is absolutely no idea and no chance at all to say good-bye but at least she died in peace and didn't suffer. 
My great-grandfather used to always say "Don't cry when someone dies, cry when a baby is born", meaning that when a baby is born they have to go through all of the hardships of life but when they die they go to a much better place.  I believe in heaven so my belief is that their spirits go there and they don't need to deal with the hardships and suffering of life.  But, we, the people left behind, are the ones that suffer because we miss them.
May all of our loved ones rest in a much better place and give all of your loved ones a hug today as you never know what may happen in an instant.

Friday, March 12, 2010

Contact your Congressmen

Here is a link that makes it very easy to contact your congressmen and I really hope that you will help with Lupus Advocacy just like I did.  It literally took me 1 minute to do this.


Participate in the LFA’s Advocacy Day on Tuesday, March 16

As you have no doubt heard, LFA’s 12th Annual Advocacy Day on Capitol Hill is Tuesday, March 16. Hundreds of lupus advocates from around the country will come together on Capitol Hill to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA’s efforts on the 16th – and do it from the comfort of your home.

Here’s what you can do from home.

Send an email, call, or write your Congressman or Senator.

Raise awareness by sending an ecard

Spread the word on Facebook and Twitter, or through your blog.

Everything you need to know about doing one – or more – of those 3 options above is now available on the LFA’s Advocacy Day landing page.

Remember, we really need you to make your voices heard on Tuesday the 16th.

Website is now finished

Just wanted to let everyone know that my website is now up and live.  there are some minor updates that need to be done but the majority of the site is ready.  Check it out at http://www.ihaveachronicdisease.com/

Elimination Diet---Day 1 completed

Yesterday sucked!!!!  It was the first day in 5 years that I have not had diet soda and let me tell you the exhaustion and headache from lack of caffeine was almost overwhelming.  the urge to order a pizza was so great and it didn't help that the kids kept pressuring me to go to their favorite restaurants for lunch and then for dinner.  they had chicken nuggets while I had a protein bar.  I'm following the diet to a T but I hope it really makes a difference because yesterday I felt awful.

Wednesday, March 10, 2010

Elimination Diet---Yikes

All I can say about this is..."Oh crap, what did I sign on for?"  I went to see a nutritionist for the first time this morning to see if there was anything nutriotionally that I could do to help my disease; I thought cutting out processed foods and things like that.  Well, we are cutting out a lot more than that.  She pulled up a few articles that suggest doing an elimination diet for Lupus in case there is a food causing some of the problems so we decided that it was probably in my best interest to give it a shot. 
For the next two weeks, I can not eat any grains, processed foods, dairy, citrus or "bad" fats.  This basically cuts out my entire normal diet.  I also have to give up my dearly loved diet soda (so, I'm binging on it all today).  After the two weeks, I should feel better and then I can slowly introduce things back into my diet.  It is very similar to how babies are introduced to new foods.
I'm very excited about it because this may be very good for me but also a bit nervous about what the next 2 weeks are going to be like.  If anyone has done this, please let me know as I would love suggestions.

Tuesday, March 9, 2010

A month ago today!!!

This time last month, I was told that I had liver damage due to all of the medications that I take to control my lupus, depression and anxiety.  Because of the damage I had to halve some of my medications and cut out the rest of them until my liver function returned to the normal range.  Fortunately, it returned to normal and I have started reintroducing some of the meds but others have had to stay at half the dosage.  This was very scary for me as I never had this problem before and didn't know what the future held for me.
Because of the reduction in meds, I started looking into other more natural approaches.  One thing I did was make an appointment with a nutrionist (which is tomorrow) and the other was to start using essential oils.  After 2 weeks of using the oils, I no longer need one of the anxiety medications and I sleep beautifully.  I was so skeptical about them but figured it was worth a shot and it seems to be working.  I'm not 100% it isn't just psychological but even if it is, I don't care; it is helping.
Over this past month, I've learned that sometimes natural remedies (when used under guidance and correctly) can really help out and aid in the treatment of my disease.  Do I think it is going to cure me?  Definitely not, but do I think it can help me...yup!

Monday, March 8, 2010

What a gorgeous day!!!

It has been a very long winter here on Long Island and today was a beautiful day.  It was 63 and sunny with hardly any wind.  R and I went to the zoo with some friends and after picking L up from school, I was able to get the kids outside so that they could ride their bikes in the neighborhood while I sat with our dog and now they are playing in our backyard.  I absolutely love days like this when they can have so much fun without it exhausting me.

Here's hoping to many more days like today.

Saturday, March 6, 2010

After 7+ years of marriage

We are finally getting a bedroom set delivered today.  C and I have lived together for 11 years and first slept together in a twin bed, then moved to a double and finally to our current king mattress.  The whole time though we have used the same furniture that I had while living at home in high school.  We bought furniture for the house, for the kids but whenever we got money for furniture we always just put it to another room in the house.  Finally, on Valentine's Day, C gave me a wonderful gift of a new bedroom set.  I can't believe that after 14+ years of being together we are finally going to be able to sleep in a beautiful bedroom.

Sometimes it is this little things that can make a world of difference.

Thanks C for this wonderful present...I love you very much.

Thursday, March 4, 2010

But, you look great!

Living with a chronic, invisible disease can be so difficult at times.  What I mean by an invisible disease is that there are many diseases where the person looks wonderful even though they feel awful.  For example, because of my lupus I have a rash that runs over my cheeks and nose.  The redder it is usually means that I am feeling lousy, however, everyone compliments me on what beautiful skin I have.  I guess I should look on the bright side and take the compliment and know that at least I look good but sometimes I wish the way I look would match the way that I feel.
Lots of times I feel like no one believes me or that I am a wimp when it comes to my health because I don't look sick.  Everyone means well by telling me that I look great but sometimes I wish that I didn't look great so that I would feel "permited" to whine about how lousy I feel. 

Tuesday, March 2, 2010

Being in two places at one time?

How do I manage this?  Unfortunately, I don't have any family that lives close by and my husband is gone 7am-7pm with work and traveling into the city so it is me and the kids together 24/7.  I really don't mind until one of them has something at school that is the same time as the other one.  A perfect example was that my daughter had a skating show at 10:30am but I needed to pick my son up from school at 11am and just couldn't logistically do it so I didn't make it to the skating show.  L pointed out that she was the only one that didn't have family there....insert major mommy guilt.  I was asked to come and read in R's class but couldn't do it because it was one of the days that L didn't have school and I couldn't bring her with me.  
How do working moms do this?  How do other moms do this?  Anyone have good suggestions about how to handle this?  I try to balance them off and switch off who gets me for the holidays and sometimes the times work out but most of the time they don't.  Sometimes C can work from home so that I can go to a show while he picks the other child up from school but this doesn't happen too often.  It would be so great if I could clone myself; I'm sure that I am not the only mom that feels this way;)

Monday, March 1, 2010

March 1st

Yeah!!!!!  It is March which means that spring is just around the corner.  I'm so excited.  It has also been exactly 1 month since my surgery and I finally feel like the recovery is moving along the way it is supposed to.  I feel like I can almost keep up with the kids again and that my energy is recovering.  My bladder is starting to behave again and my infection is gone.  My liver functions are returning to normal and I was able to start my main lupus med to keep my lupus at bay.  I'm super optimistic that I have turned the corner and that March is going to bring good health and the return of a healthy mommy.
Can you tell that I have spring fever?