Our Night Out!

Saturday night Ross and I went out with some friends to the Melting Pot in downtown Minneapolis and had a blast!!! It was just what we needed...a night out with great friends! Check out my chipmunk cheeks!!!!!!!!! YIKES. We are trying to make light of it though and it has turned into a joke at our house. I am also wearing hair extensions in this picture as my hair is getting VERY thin and sparse these days.....

Chest pains are back so I guess I don't have the whole acid reflux thing...so back to square one on that whole issue.... 2nd round of chemo a week from this Wednesday. They will be giving me injections BEFORE chemo this time in hopes that when I get my treatment and my counts drop, they won't drop as much. Hopefully this works, I don't want to be on "house arrest" again!!! Joint pain is back in my knees which is weird since I am on such a high dose of the steroids....however I'm keeping this a secret from my doctors right now as I don't want them to up my dosage ANYMORE...my cheeks are going to explode!

We invested in a $20.00 swing for Nolan and attached it to our deck....It has been a lifesaver as he can sit and swing in it forever!!! He loves to watch Daddy mow the lawn and play basketball. Best $20.00 I think we ever spent:)

Ready for a new week and hopefully a positive one before my next treatment!!!

Good Friday turned BAD

So I basically can't stand to look at myself anymore in the mirror. My washed out puffy face, bloodshot tired eyes and thinning hair are almost too much to bare anymore. Today it was all confirmed when someone told me I looked "tired, pale and puffy." I know they weren't doing it to hurt my feelings but it really hit home and now I am finding myself crying in my office. If anyone is reading this right now, just say a little prayer I can get through my day today. I still have 3.5 hours of work left and don't know if I can get through them.

Got some time? This is a long one........

A new week and it looks like I am back on the top of the roller coaster! My WBC are back to normal and I feel great. The doctor said this will be my life for the next 6 months...a roller coaster. I get chemo again in 2 weeks so after that this will all start over. My labs for my kidneys are back down again, so we are a little concerned on why the chemo is not working yet, but hopefully the next round will work better. My hair is starting to fall out so I'm not sure if we will have to cross the whole "wig" bridge soon or not. Right now it is just thinning so we'll see.

We are still working on the whole getting our money back for our trip. Basically the airline will only let us exchange our tickets for a different ticket of the same value or greater, however it has to be booked by March 2009 and we have to pay an additional $120/ticket for a "fee". Ross is going to call back and talk to "management" to see if we can provide a doctors note or something to get our full refund back. Doesn't look too promising, but we have to try! My mom will cancel the timeshare we were suppose to stay at and she will also get charged a cancellation fee. We feel so bad since we had this trip booked last year and then found out I was pregnant and didn't want to go to Mexico 7 months pregnant! I'm starting to think we are not meant to go to Mexico, so our next trip will be booked somewhere far far away from there:)

A friend of a friend gave me this website called http://www.butyoudontlooksick.com/ It is a website about living life with a disability, disease, etc and provides some answers to questions, etc. I found this article about a mother who's daughter has lupus and thought I would share it:
http://www.butyoudontlooksick.com/2008/05/a_mothers_view.php It made me really realize that I am not only suffering from this, but my family is also. I never really looked at what Ross or my parents go through on a daily basis with me. As a parent myself, I can't imagine what goes on in my mom and dad's head. I cannot imagine Nolan being sick with a disease, can't imagine the pain of not being able to do anything to make it go away, constantly worrying if he will get better or worse and if we are making the right decisions for treatment. Then, there is Ross....wow what he goes through for me! I guess what you promise when you get married "In sickness and health...." is really coming through right now:) He is in constant worry about me. He never knows what "Anne" will wake up in the morning, the happy energetic Anne, or the tired, crabby, in pain Anne. (Yes I have multiple personalities right now!!!) He saves his sick days at work in case he will have to take them to care for me or the kids, lets me nap whenever, does laundry, dinner & cleaning, picks up my weekly prescriptions, will run to the store in a second if I need something, takes the kids out of the house if I need "Anne time" and still manages to keep a smile on his face! He truly is an amazing man!

I just got put on an acid reflux medicine to hopefully help the chest pain. Knock on wood but I have not had any chest pain in almost 5 days now so I'm hoping the medication is working!!! I think those are my updates for now!

Nolan being rambo on his new toy....

Thank You!

I just want to take this time to thank family, friends, blog readers, strangers, etc for all your prayers, thoughts, emails, cards, etc.etc.etc........... I am truly in awe as I sit back and go through my inbox of emails from you all & comments on my blog giving me strength through your kind words. Ross & I are truly blessed to have such wonderful people in our life and as I already knew we had wonderful people in our life, It sometimes takes things like this to happen in our life for us to REALLY see it and appreciate it. Its something we took for granted and will never take for granted again.


A lot of people have asked how they can help and I know I am horrible at asking for help or accepting help from anyone until it is too late, however, right now the only thing we can really ask for is what you are already doing....Praying, loving, listening, & supporting us through this time. I'm sure Celeste would be open to getting any help she can on the Lupus Benefit for the Lupus Foundation she wants to have this winter too. She can be reached at: celeste.burau@gmail.com

I apologize for having such a negative post yesterday, I regretted it after I posted it and debated deleting it but then realized that this blog is for me to reveal my true feelings and thoughts while I go through this battle. I know I'm going to have better days ahead and I have to be patient for those days, sometimes it just seems so far away and things keep going backwards for us instead of forward. I keep reminding myself of the title of my blog, "Perception is half the battle" and when it comes down to it...that's all it really is......

I've reached an ultimate low..........

I am devastated to say the least. I'm sad, mad, and every other emotion that is bad. The one thing I was looking forward to in a few months, the one thing that has been in my head to keep me positive throughout this whole thing, the one thing that I could escape to in a few months has been taken away....Ross & I's trip in December to Mexico.

My doctor said today there is no way I will be going. My body will be in way too high risk of infection and disease and being in Mexico could be very dangerous for me as I would be easily available to disease there and no good doctors to help me if I were to get sick.

I'm so frustrated right now I don't even know what to say, I'm speechless. How the heck do you cancel a trip that is already bought and paid for anyways? Pretty sure were out all the money. Oh yeah and I hit the garage today with my car so now there is a dent on it. I'm losing hope here people....

Oh chemo how I hate you!

Well, it looks like my body just isn't handling chemo like we thought it was. My white blood count has reached it's ultimate low of 0.3. If I were to come in contact with anything, I would almost 100% get it and not be able to fight it off. My doctor has ordered me to stay home tonight and not go in public. (I feel like I'm on house arrest or something!!!) I will be getting the injections starting tomorrow morning at 7am and then I will have to get them Saturday and Sunday.....ahhh and I thought I would have a nice, relaxing, laid back weekend....

Trying to stay positive....it can only go up from here I hope. And I have almost made it through today with out any chest pain!!!!!!

Update on Chest

It's 2am and I am wide awake so I figured I would updated you all on the whole chest thing from yesterday. Oh what I would do for a good nights sleep again!!!!

The good news is that they did not find a blood clot anywhere! My chest and lungs look good and healthy. The bad news is...then what the heck is causing this unbearable chest pain??? It's becoming more and more frequent and hurts more and more each time. It used to come once a week and last a few hours, now it is coming daily and lasting a few minutes to a few hours. I'm not sure yet what the next test/step will be to find this out but I'm just praying it isn't a sign that the lupus is attacking my lungs or heart now. Please keep praying it is nothing and my body is just messed up from all these medications going through it!

My white blood count basically stayed the same so I am not taking injections yet Thank God! I will get it tested again Thursday so hopefully it stays the same or starts heading back up. I've been washing my hands like crazy and just staying away from anyone with colds and flu's and so far and remained not sick so that is good!

Please keep the prayers up, I know they are working as I can feel them when I am at my lowest point and ready to give up. Nolan is doing a good job of trying to keep mommy positive too...