Wednesday, October 5, 2011

Lupus Walk

I'm walking in about 10 days to raise money for the Lupus Alliance of Long Island/Queens.  If anyone would like to make a donation, here is the link.  Thanks so much.

Tuesday, October 4, 2011

I hate this disease.

I'm just going to vent for a few moments if you don't mind.  I know that I could be so much worse off and for that I am thankful but I am approaching the 10 year anniversary of my diagnosis and it has got me thinking of how Lupus has affected my life.  For the most part, I have not allowed it to affect my life but in some ways it has changed my life in ways that I can't control.  I hate that no matter what I do I have to remember that I will probably pay for the fun later.  I hate that my kids are scared that mommy may be sick and have to worry about it.  I hate that I can't run with the kids the way that I want.  I hate that I can't be the wife that I want.  I hate that I had such a blast but now am paying the price for it.  Sometimes I forget that I have this disease but it just won't ever let me forget as it always comes back to bite me is a$$.

Monday, October 3, 2011

Paying the price for fun

We took the kids to Disney World for 6 days and my goodness am I paying the price for it now.  We had so much fun while we were there but WOW, I don't know if I could be in more pain.  At the time, I thought to myself, I should rent a wheelchair, especially at the end of the trip but I was too afraid that it would scare the kids so I didn't but now I am hobbling around like crazy.
I definitely pushed it too much and didn't admit how much pain I was in each day but it was so worth it to see the magic in their eyes.  I hate though that I have to pay the price for having fun and ultimately the kids have to pay the price because now I am almost incapacitated from pain and fatigue.

Wednesday, August 24, 2011

Earthquakes and Hurricanes---What is going on?

What is going on?  I live in the Northeast and felt my first earthquake yesterday and are now getting ready to deal with a hurricane this weekend....what is going on with the weather????  What is going to happen next, Locusts?!   This is absolutely bizzare.

Yesterday, I was standing in my kitchen and all of a sudden I started swaying back and forth.  I thought I was seriously ill until I saw my fridge swaying with me :)  It was a bit disconcerting but fortunately there wasn't any damage here in NY.

Now, they are predicting a category 1 or 2 hurricane for us for this weekend.  It is insane and I will say it is stressing me out!

I hope everyone else along the East Coast stays safe!

Thursday, August 18, 2011

What if something happens to me????

My husband is very capable but sometimes I do look at him and worry what would happen to the kids if something happened to me.  I'm sure that everything would end up being OK but I definitely worry.  I'm the main caregiver and I'm home with them all of the time so I know everything about them and I manage the house, kids and animals while  my husband leaves at 7am and comes home at 7pm and really doesn't have a clue.  There are times that I sleep in and I come down to find the animals haven't been fed simply because he had no idea what to feed them and the kids had no fruit and were given McDonald's for breakfast because he couldn't figure anything else out.  I know I should be happy that they were at least fed but I still worry.  Any other mom's or stay at home dad's worry about this?  Sometimes I feel like I should write everything down just in case.

Thursday, August 11, 2011

My Lupus Tattoo

Last night, I went with a friend and got an addition to my butterfly tattoo.  I got the purple awareness ribbon placed behind the butterfly.  To me this tattoo symbolize my fight with Lupus but it also shows that I will not be beaten by Lupus.  When I originally got the butterfly I didn't get the awareness ribbon because I didn't want everyone to know that I had Lupus but now that my children are older, my daughter tends to tell quite a few people so even strangers know about my disease.  To some extent, she seems proud of me and it makes me proud of myself.  I was talking with her about it last night and she said that the new part of my tattoo (in her mind) was to show that I had Lupus and that even though sometimes I may be not feeling well I could still laugh and have fun.    She is proud of her mommy that even though I am facing a hurdle, in her mind, I am not letting it slow me down.
I left her room last night feeling so happy because for the first time in my life I truly felt like I had partially beaten Lupus;  one of my biggest fear is that it will impact my children and I realize that it is impacting them but not in completely negative way.   I am teaching them that even in the face of chronic pain they can still live, laugh and have fun.

Sunday, August 7, 2011

Truly hate days like this

I truly hate days when I wake up and it takes every effort to just move from my bed to the couch.  I feel like such a bad mommy when I feel like I can't interact with the kids.  Yes, there basic needs are met and this is only one day but it is still a day out of their lives where I feel useless to then.  They had fun playing together and then we watched movies on the couch but I still feel so drawn.   I think everything has finally caught up to me.  Fortunately, it is Sunday so I was able to do this I just hope that by tomorrow I have more energy.

Saturday, August 6, 2011

Wow, it has been a very long time!

Wow, I can't believe it has been so long since I have last checked in.  My life has been crazy and I have been having some health problems but that isn't any real excuse for not checking fact it probably would have done me good to check in and write about some of my frustrations!!!!!

Oh well, it is summer right now and the kids are home for the summer and we are going full-bore with life and to be honest I am completely and utterly exhausted right now.  It is so hard right now.  My baby sister just got married last week and it was an absolutely beautiful wedding and I'm so happy for her but her bachelorette party was Thursday, rehearsal Friday and wedding was Saturday and then we had to drive the 7 hours home on Sunday so needless to say, I am completely exhausted.
Lauren and Ryan were great and had so much fun at the wedding and so did Conor and I but I am definitely paying for it this week.  The kids wanted to resume our normal go-go-go lifestyle but I just couldn't.  I am so tired.  It is 6:45 on a Saturday night and I'm already in my jammies trying to keep my eyes open...I think Daddy is on duty tonight :)

I have to remember that it is OK to ask Conor to step in while he is home for the weekend so that hopefully I can regain my strength for the upcoming week.

Saturday, March 5, 2011

Diet soda no more!!!!!

 As you all know, I have a major diet coke addiction but over the past few weeks, I have been cutting them down about about 1 per day which I'm very proud of.  Well, today, because I didn't feel well, I lapsed back into my bad behavior and had more than I should have.  Guess is is 2am and I'm awake because I was laying in bed with such bad twitches that once again the whole bed was shaking.  This hadn't happened in about a week and it got me thinking to what triggered it the last time and I realized the last time was when I had more than a few diet sodas in a day.  I had been getting the "twitches" on a pretty regular basis but then they had gone away until last week and then again today.  The neurologist had been chalking them up to my CNS involvement but could it be due to the diet soda?????

Thursday, March 3, 2011

Paleolithic Diet

I was talking with a coworker the other day about this diet which basically has you eat what your ancestors ate and it seems to make sense.  Basically you eat non-processed foods and what the cavemen ate.  I've done some reading and there is some anectodal evidence that it has helped with Lupus symptoms so I think I may give it a shot.  It is going to be very difficult to stick to as it cuts out all of my favorite foods like sugar, breads and pasta but in the long run, even if it doesn't help with my lupus it will help me to eat better.

Wednesday, March 2, 2011

I did it

I got my butt in gear and made it to the gym this morning!!!!  Yeah to me!  It sucks because the only time that I can go is 4:30am because of the kids but at least I went.  I sure hope that this is the beginning of good things for me.

Thursday, February 24, 2011

Please keep my dad in your prayers

I am now at my parents' house as my father suffered a massive heart attack last night.  My mother called me this morning to let me know and we came up here as soon as we found out.  I just got back from visiting him and he is doing better but it is so tough to see my daddy looking so tired.  He is in the ICU but they plan to move him down tomorrow and hopefully he will be discharged in a few days.  He exercises and eats right so it is just one of those fluke things.  It came as such a huge shock to all of us because he is so healthy but it is his good health that also kept him alive and will allow him to heal.

Live each day to the fullest as you never know when today could be your last and love like today is your last!!!!!

Going Out Tonight

I can't believe it but I finally feel well enough to go out with my husband tonight.  I'm nervous because I'm meeting a bunch of his friends from work which I have never met before but I'm also excited.  We are heading into New York City so it should be a good night but I've got these irrational fears that make no sense.  Since I'm on high doses of prednisone, I've got the lovely moon face so I'm very self-conscience of that and even though I'm watching my eating and joined the gym there is nothing I can do about my "round" face.  Then I wear a wig because I have lost most of my hair due to the Lupus so I worry that they will either notice it is a wig or it will fall off or something.  I know that these are completely irrational but since it has been so long since I have been out with "new" people that I'm a nervous wreck.  I'm super excited but also super nervous.

Monday, February 21, 2011

I joined a gym!

I'm so excited and I just had to share that I went and joined a gym this evening.  My doctor told me that it would be a good idea to start exercising and that scared the crap out of me because in the past everytime I have tried to exercise, it has resulted in a major flare and I told her that.  She told me to join a gym and get a trainer that can help design a plan for me and just take it slow.  About five minutes down the road, a new gym is just opening tomorrow and I decided to join.  It is a bit on the pricey side but the trainers are certified and are used to dealing with disability and arthitis.  The biggest thing though was that the gym has a pool which none of the other "cheaper" gyms have around here.  Water aerobics is the best thing for me and my joints so I'm super excited about it.  I do feel a little guilty though as we are trying to watch our spending and we have a "gym" in our basement but I feel like I need the "push" of a trainer and the gym to really get me going.

Besides, I need to loose some of my prednisone weight before boating season starts in another few months ;)

Sunday, February 20, 2011

Feeling good?

I woke up this morning feeling better then I have in weeks...I don't know what to do with myself!!!!  I actually am not hurting.  I feel like I should take advantage of feeling good and do a bunch of stuff but I just want to revel in feeling well and not push it.  I'm so excited and hope this is the beginning of feeling good for good!!!

Thursday, February 17, 2011

I did it

I spoke to my boss yesterday about my hours.  I woke up yesterday absolutely drop dead exhausted and in near tears at the thought of going into work.  The idea of work isn't the problem, it is the 45 minute one way commute that puts me in tears and then the sitting in a desk chair all day that makes me stiffen up.
I had a meeting scheduled with him to discuss future projects with him so I figured discussing my options was something I needed to do also so before the poor guy had a chance to say anything I blurted out that I needed to talk to him about my hours.  I've only been at this company for 2 months so they could have easily said "Tough, you need to work the hours you agreed on or quit" but instead he breathed a sigh of relief and told me he could care less where I worked from.  He said he doesn't need me in the office to do my job and knows that I will do my job so if I want to work Fridays from home then that is fine with him.  I was so relieved.  From now on I am going to work Monday and Wednesdays from the office and Fridays from home.  I will continue to put in a few hours from home on Tuesdays and in the evenings but the Fridays are going to be a huge help.
I was so proud of myself for speaking up as it was a huge weight on my shoulders and it was difficult because it was once again admitting that this stupid disease was affecting my life but he made it so much easier for me.
Thanks to all of the bosses out there that understand that work is not the end all be all in life!!!!  I just wish more people understood this.

Tuesday, February 15, 2011

Breaking my heart

My 6 year old daughter brought home a home made book yesterday from kindergarten about feelings and there were two pages that absolutely tore my heart out; one in a good way and one in a bad way.  The first was that she felt loved when mommy gave her kisses.  That melted my heart...I loved that one.  The second was that she felt said when mommy had to go to the hospital.  That tore my heart out because what 6 year old should even have to be faced with the proposition of their mother needing to go to the hospital on a regular basis.  Sure there are mothers that need to go, but why do I need to be one of them?
Then it got me to thinking that at least it will hopefully teach my daughter empathy and patience with others along with a sense of caring for those that may be sick.  Hopefully it will teach her that not everyone is as fortunate as she is and that she should cherish each day.
I guess that I am trying to look on the positive side of this because if I don't, I may just cry!

Sunday, February 13, 2011

When to call it quits

I started working about 2 months ago and since then my health has gone downhill and the stress on my family seems to have escalated.  My husband works a very demanding job in Manhattan and is gone 7am-7pm so I am the main caregiver of the 2 kids and now I work part-time Monday, Wednesday and Fridays 9:30-4:30.  This doesn't seem like many hours but it does seem to be taking a toll on both myself and my family.  Our weekends, which used to be nice and relaxing, are now spent running around like chickens with our heads cut off and I spend every evening falling asleep on the couch by 8pm, barely spending anytime with my husband.
I'm not working for the money, as I'm not making much, but I do love the job and am enjoying being "me" instead of just mommy and wife however I don't know if the toll is too much.   How do I know when enough is enough?  How do I know how to make the decision?
My plan for now is to give it another month or 6 weeks and if things don't improve then I may need to call it a day and quit.  I'm not a quitter but I'm not sure what other options I may have.

Saturday, February 12, 2011

Holistic Nutritionist

I just had to share that I finally made it to my holistic nutritionist appointment today and it was amazing.  She gave me a whole new leash on life and I can't wait to see how it goes.  I've been to nutritionists before and they always give such a strict diet that it is near to impossible to follow where this was done more to determine which of my systems were out of whack and how to get me off of my diet soda.  She went over all of my medications, what I hoped to get out of the appointment and also did some "electrical work" with my hands.  While doing the work with my hands she said things about me that I have no idea how she knew.  I swear she was psychic.  It was absolutely amazing.  I currently take 7-8 anti-depressants and we are going to try and wean me off of these medications over the next few weeks by using all natural approaches since I am still depressed even on the medications.  I feel like I have a whole new lease on life and am so excited to start this process.  I will keep everyone updated as I go along.

Friday, February 11, 2011

Never so excited to have an infection

I saw my doctor yesterday and after looking at the bloodwork which showed elevated white cell counts and feeling swollen lymph nodes throughout my body, he determined that I have a systemic infection which is what is causing my shortness of breath.  It doesn't explain some of the other problems but it definitely explains the shortness of breath so I'm very excited about that.  I almost kissed him when he told me.  They immediately put me on antibiotics and told me to continue my inhaler.  Hopefully this will be the turn around that I need.

Thursday, February 10, 2011

I give up!!!!

I'm not really giving up but I really would like to!!!!  I spent 8 hours yesterday in the ER because I woke up feeling short of breath and it just got worse as the day wore on.  I assumed it was from the infusion the day before but they said no and that I should call my doctor, so I did.  She was concerned and said to go to the ER.  It ended up being either a viral infection or bronchospasms but whatever it is, the breathing treatments worked so I was able to come home with inhalers.
I feel so bad because my husband had to take time off to drive me there and then we had to get a babysitter for the kids so that he could come back and sit with me for a bit and bring me home.

I just want to curl up in a ball and hibernate and let my body heal.  I feel like that is what it needs to do but with 2 children, a husband and a part-time job, that truly is not an option ;)

Wednesday, February 9, 2011

Wow, it has been a long time!!!

I am so sorry that it has been such a long time since I last updated but things have not been going so well and I have just been doing what I can to survive.  Long story short, I've been dealing with pleurisy and pericarditis since September and around Christmas it got so severe that I was in and out of the hospital 5 times in one week.  They finally got it under control with high doses of prednisone and an increase in my CellCept....that was until about a week ago when I started with chest pains again.  They immediately increased my prednisone back up to 60mg in hopes that would work; it didn't.  I also developed extreme hair loss, severe pain and fatigue so bad that I can hardly function.  Because of this, I went into the hospital for an IV infusion yesterday in the hopes that it will shock my system back into a normal state.  So far today I feel like crap!!!!!!!!!
I've had to get a wig because my hair is coming out in handfuls and I am so uncomfortable being out in public like that.  I'm still trying to take care of the kids and maintain normalcy for them.  I'm also trying to continue to work my part-time job but am beginning to think that may have to go and that I may need to look into disability....
I feel so much like a failure as a wife, mother, friend and employee because I can't do any of them right now as well as I should be.  I'm so mad at my body for betraying me and my family.  I have been in the biggest funk for so long and know that I need to get out of it but just don't know how.  I really hope this infusion works.
If you have read all of my rantings, then thank you as it really helped to get it off my chest.