Sunday, September 28, 2008

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!!!


Friday, September 26, 2008

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.

Tuesday, September 23, 2008

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....

Saturday, September 20, 2008

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......

Friday, September 19, 2008

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....

Thursday, September 18, 2008

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...

Tuesday, September 16, 2008

Immediate prayers needed please!

My White blood count has dropped yet again and is now at 1.7 ( I should be at 10-13) My body basically cannot fight anything off right now if I came in contact with it. I will be starting an antibiotic today and getting labs again tomorrow. If it doesn't get better by tomorrow, we will start injections.

Second, I have been experiencing some on and off again chest pain and just mentioned it to my doctor today. He is concerned I could possibly have a pulmonary embolism. Pulmonary embolism is a blockage of the pulmonary artery or one of its branches. This can be severe and even deadly. I will be receiving a chest xray and ultrasound tomorrow morning now because of this.

Seems like things are not slowing down for me and it's really starting to get me down. Please pray this chest pain is nothing and pray that my WBC go back up so I have the energy and strength to fight off anything.

Monday, September 15, 2008

AHHH!

So what we didn't want to happen, happened. My White blood count dropped from the chemo. Before Chemo it was at 13.5 and now I am at 3.4 which is in the dangerous zone I guess. This makes me super prone to infection and sickness. No wonder I'm so tired!!! I have to go in again tomorrow morning to get it tested and if it is low again, I will be receiving another injection! Ahhh! I'm sick of these labs and injections and doctor appointments!

Friday, September 12, 2008

Having a MUCH better day!

Feeling a lot better today, not as frustrated which is good. Thank you for all the emails of support on Wednesday, it was what I needed on a day like that!

I have stopped fighting the 4am wakeful period and instead started embracing it. I now, let myself lay in bed until 4:30 and TRY to get back to sleep and after realizing it isn't happening, I get up and make lunches for the day and then work out! Seems to be working out well since this is the only time in my day I have the energy to do this! Nolan has also decided he would like to keep mommy company at 4am because he too decides to wake up at this time and talk in his crib until I finally come in there and put him in bed with daddy. He must know I am wide awake and bored:)

Starting next week I will begin working 4 days a week and have Wednesdays off. I will still be full-time so my days will be a little longer. I have been noticing Wednesdays are my hard day. I think this will be a good change. Wednesdays now will be my day to get my appointments done and hopefully catch a nap in there too. I'm very thankful I work for such a great company that lets me do this!

I also just got approved to start selling some small business insurance in addition to my marketing and advertising responsibilities! I am so very excited about this challenge and it keeps my mind off my health! I will be focusing on flower shops, fitness clubs, hair salons, spas, gift shops, etc. Stuff that I am actually interested in. If you have any good prospects for me, let me know! I can't wait to get out there and sell!

Lastly, one of my sister in laws, Celeste, just told me that her and her husband,Troy, want to put on a Lupus Fundraiser this winter in honor of me. January/Februarish. She would like to do a dinner and charge a cover for it and the proceeds go to the Lupus Foundation! I was so excited to hear this and thought it was such a wonderful idea!!! Hopefully we will get more info put together soon and let you all know and hopefully we can have a huge turnout! I'm so grateful to have such a wonderful, supportive extended family too!

That's about it for today, hoping to get some good sleep this weekend and feel refreshed on Monday!

Wednesday, September 10, 2008

Having a bad day

I'm having a hard day today...I'm super tired, was wide awake from 1:30-4am. I get up to pee 4-5 times a night so I'm basically getting no sleep. I'm tired, frusterated and crabby.

I feel fat and ugly, my face is turning into the horrible "prendisone moon face" and though everyone swears they cannot tell, I can, and that bothers me. I feel like a chipmunk. My stomach is also starting to get bloated. I have no energy to work out when I get home from work, I barely have the energy to put dinner on the table and play with Nolan until 7pm when he goes to bed. Once, he goes to bed, I am basically checked out for the night.

I keep telling myself this feeling is normal and temporarily but that doesn't necessarily make it any easier.

Hopefully tonight I can just go home and relax and feel better tomorrow!

On a side note, I have been ordering some natural makeups, lotions, etc and I received this information from one of them. This is a list of synthetic cosmetic ingredients known or strongly suspected of causing birth defects or endocrine disruption. Please read your labels on your soaps, makeups, shampoos and try to stay away from these. It made me absolutely sick to my stomach knowing most of my cosmetics I used and used on Nolan contained them. I threw them all away and bought all new stuff.
1. Methyl & Propyl and Butyl and Ethyl Paraben
2. Imidazolindyl Urea
3. Diazolindyl Urea
4. Petrolatum
5.Propylene Glycol
6. PVP/V Copolymer
7. Sodium Lauryl Sulfate
8. Steralkonium Choloride
9. Synthetic Fragrances
10. Synthetic Colors
11. Phthalates
12. Triethanolamine

Monday, September 8, 2008

1 down...5 to go...hopefully!

Today I started my first treatment of chemo. It took about 6 hours. Wasn't that bad, just boring!!! I started getting a little allergic reaction so they gave me some benedryl and that put me out for a little bit too. I'm just really tired right now, but other than that I feel good.

My labs looked good, except the BUN levels, which was almost double what it has been. I guess this just proves that I do need this treatment. Hopefully that will start coming down and my kidney function can get better!

The doctors said about 7-10 days after chemo I will notice more symptoms like being really tired. This is due to the low white blood cell count. I am also very prone to getting sick so I have to make sure I am careful around others that are sick too. I'm really hoping my hair doesn't fall out, but they gave me some contact people to meet with if it does. We'll have to cross that bridge if it comes.

Thank you for your prayers and thoughts today and everyday! Hopefully I will only have to do this 5 more times!!!!

Tuesday, September 2, 2008

Prayers Needed!!!!

As my first round of chemo is quickly approaching I am in great need of some prayers these next few days....

Please pray for increased strength from me as my body receives these powerful & life saving drugs. Please pray my body can handle the drugs well and can continue with my everyday activities.

Pray that as my immune system gets weaker from chemo, my body can stay strong and fight off the illnesses that try to attack it.

Pray that my husband can continue to stay strong for me, & our love for each other continues to grow through this struggle.

Pray that I will still have the strength to continue being a good mommy to Nolan and that he will not notice I am tired and weak.

Pray that my kidneys keep fighting and don't give up, and the scars on them can heal to increase my kidney strength.

Thanks for your prayers! I will update on how it went on Monday!

Monday, September 1, 2008

First week down!

Well it's officially been a week since I got the diagnosis and treatment has begun. The good news is that this horrible IV is out of my arm....
Bad news is that I am now taking 6 more pills a day....

So far I am tolerating the medications very well. They make me drowsy, and a little nauseous, but other than that I have had no bad reactions. Chemo was suppose to start this week, but I couldn't fit it in with their schedule and my schedule so we will wait to start that a week from today instead, September 8th. It will be pretty much an all day extravaganza. I will have to sit there for 6-8 hours with an IV in. They don't have Internet either so I'm going to go insane pretty much. I guess I will catch up on all the talk show drama for the day. I'm really hoping I am one of the lucky ones and don't have any side effects of the chemo. Some side effects include: vomiting, fatigue, hair loss, sterility, etc.

Other than that, I have been trying to research a lot on Lupus and Kidney Disease and the technical term for my diagnosis is "Lupus Nephritis." I'm definitely learning a lot and becoming more educated on the disease and trying to educate others also.

So far, I am still working full-time. Some call me crazy, however I believe I need to keep my life as "normal" as possible. Since I am still feeling fine to work full-time I want to continue doing that. If it gets to the point where I am jeopardizing my health, we'll have to re-evaluate it then.

My kidneys are still a little sore from the biopsy, but mostly when I do too much lifting or walking. One more week to go until I can start working out which I can't wait for!

Thank you all for your positive comments, cards and prayers. I'm confident that in 6 months I will be posting that I am in remission!!!!!

Here's a little video of Nolan and Daddy playing... these are the guys that keep me positive and strong throughout this battle.....



Updated pic of me and Nolan.....