I did it....

I wore my hair down without extensions in public!!!!!!!! It isn't that bad is it?? It is actually starting to fill in more though it is SO THIN! I think I have finally accepted it and am starting to be more comfortable with it. Now I just need a good trim to start getting it healthy again!!!

Christmas

Look...my puffiness is almost gone!!!!! Now, I just need my hair to get thicker again so I don't have to wear these darn extensions anymore!!!

Nolan was not fond of santa.....

It was the most perfect Christmas with the family! It was so fun to celebrate Nolan's first one. Everyone even stayed healthy which was a relief with everything that is going around! I am feeling G-R-E-A-T and can't wait for my next appt in a few weeks to see if I have made more progress!!! I am starting in January to go back to work 5 days a week too! I truly believe we are on the right path right now and hope we stay on it:) I have a great feeling 2009 is going to be a great healthy year for us!!!

Have a Merry Christmas!

Hope you all have a wonderful Christmas! We will be leaving Wednesday morning to head to Wisconsin for a few days! Were praying for health and safe travels while we are gone! I'm feeling much better but I think my kidney medication dose is getting too high for me because I am super nauseaus and can barely eat. It's frusterating!!!

Here's a few new videos I had to post. The first one is Nolan taking his first few steps and the second one is Nolan laughing hysterically at his brother. (Make sure your sound is on! It's great!)

Finally!

I'm starting to FINALLY feel better and hold some food and liquids down! yeah! I went in to the doctor yesterday and he ended up sending me to the hospital for dehydration and low blood pressure so I had to get a few hours of IV's. Not what I intended, but was thankful I went in when I did. He said I was on the border of my body going into shock and couldn't believe I even drove myself to the clinic. (I tend to surprise him with the things I do while sick)

Nolan is already 10 months old this month!!! We are so excited to celebrate his first Christmas this year. I'm sure he will like the wrapping paper more than the presents, but it's still exciting! Here are some recent pics of the little squirt. He has taken a few steps..but not walking yet!

and who needs toys when you have a box......

One step forward, two steps back...

I feel like I'm dying. I'm weak, tired and sick. I haven't ate in 5 days and when I do eat, it all comes up, I have also lost 7lbs just in these 5 days. I went in for labs on Friday as I just didn't think this felt right, not like the normal flu. Some of them have come back normal, the others we are still waiting for the results. I'm still not holding down food tonight so I will be staying home from work tomorrow and getting more lab work taken. I feel like such a bad mom and wife as I am not able to do anything. Ross has been so wonderful by cleaning, cooking, playing with the boys, etc. but I feel so guilty! I'm really hoping this is just a really bad flu and nothing more serious. Please keep praying! We were so close to going in the right direction, I don't want to start going backwards! Also, next weekend my mom and sister are suppose to be coming up to do our yearly Christmas baking so I have to get better soon!

Tis the season to get sick

unfortunately, I did end up getting the flu. I don't think I am 100% over it as I still feel icky. I am keeping food down but have no appetite what so ever. I have been living off crackers and toast the last few days. I have also been having spurts of wakefulness in the middle of the night again. Lately it has been from about 1:30-4. It has been pretty painful since I have to get up at 5 for work so I'm pretty exhausted too. Hopefully I feel better soon as I am having some great friends from Wisconsin come visit!

Next week I have a few appointments to check on my health status and how far I have come. I'm super nervous but excited at the same time. I'm hoping if things are still going in the positive direction, we can start lowering my medications which would be wonderful!!

FLU? I hope not!

I'm barely getting through the day today. I feel so sick. I really hope it is not the flu!

Infection

Today my labs showed I had a UTI so I'm back on an antibiotic. Luckily they caught it before it got into my kidneys!!! Other than that..still feeling pretty good which is great!!!

Two years of wedded bliss!

Today is Ross and I's 2 yr anniversary! Though we should be in Mexico, we went to the Chanhassan dinner theatre on Saturday to celebrate instead. (A little less dangerous for me:) Picture below is at the theatre. It was a great time!


We had a wonderful thanksgiving and had so much this year to be thankful for!

Sickos

Seriously, everyone is sick around me! There are a bunch of people who have been sick from work lately, Nolan came home from daycare with pink eye today, and now Ian has a fever! I hope everyone can get better before Thanksgiving and I can steer clear from it!

I started running again since my knees haven't been in pain and that seems to be going pretty good. I am really hoping that I can run a half marathon next summer...that is my goal!

I'm starting to get sad thinking about this Saturday. This Saturday would be the day that Ross and I leave for Mexico for our anniversary! I can't believe that we would be packing our bags this week and heading somewhere warm:( it just makes me look forward to a future trip that much more.

Other than that...no new news... which is good news. I am feeling better every day and am really excited that 2009 will be a great & healthy year for us.

I hope you all have a wonderful Thanksgiving! We sure have a lot to be thankful for this year!

Bittersweet

Today was bittersweet for me. My Nephrologist confirmed that I am in partial remission!!!! Basically my lupus is not flared up anymore (hence why I'm feeling better lately) but my kidneys are so once my kidneys are in check I will be in remission and as the labs showed today...I should be well on my way!

The bitter part..the doctor was not happy I have tapered to 2.5mgs of steroids. He wanted me to stop the taper at 10mgs and stay at that dose for awhile. SO...I am back up to 10mgs for another month before they taper me off them again. He said I tapered way too fast and that can cause me to flare up again and I would have go back to the beginning and start this over. Obviously I don't want that to happen so I'm back on 10. Arg! I was really hoping to be off steroids for the holidays as I want to be able to take pictures with me in them again!

As my baby is getting older...9 months already...I am starting to get sad that we won't have anymore kids, at least biologically. I am finding myself jealous of all my friends and strangers that are pregnant and wish I could experience that once more. I talked again with my doctor about this today and I know it would be life threatening for me to be pregnant again, however it's still sad. I really thought I had accepted this, but now I am starting to doubt it. I'm sure as Nolan gets older and older it is going to be harder for me to accept it. See how big he is getting....He's got a little owie on the nose...Daddy put him on the couch and walked away for a second and Nolan took a tumble. (I have lectured him since about not leaving a baby on a couch alone!!!!)

I can't believe I am actually posting these pictures below but I want to show you the effects of steroids. The picture to the left is me at my highest dose of steroids. You can see my super puffy cheeks and my double chin!!! The picture to the way right is me today on a low dose (2.5mg). There definitely is way more puffing that has to go down but it's starting to look better..right??? The picture below them is me in July (Only 4 months ago!!!!!!!!) right before I started on steroids. Big difference eh? Crazy how a drug can do that to your body. I hate steroids!!!

Never enough sleep!

The lack of energy is hitting me hard this week. Last night I was in bed by 7:30! I just want to sleep all day. I have also been nauseated every morning after I take my medications and it lasts a few hours. I hate this feeling and hope it goes away soon! I am also starting to notice my face puffiness go down which is a great relief and makes me feel better.

I have a few appts tomorrow and lab work so hopefully everything is still going in the right direction.

I would also like to send out a prayer request for my sister. She got laid off at her job yesterday. She is pretty upset about it and worried about what the future holds for her next. I know everything will be ok and she will find something, but your prayers for her are greatly appreciated!

Feelin' Good!

I don't have much to update this week, however I am feeling so good lately. I feel like I am stronger and have more energy. I'm not sure if it is because I am tapering off steroids, of if I am actually getting healthier!!! I have labs again next week and am very anxious to see the results. Also..my knee pain is completely gone. It is so weird, but so awesome! I woke up one day and it was gone. God has been answering my prayers!!!

Ross is also feeling good, which is nice to have him back to normal. We are thankful that Nolan & I never got sick and daddy got well fast! Thank you for the prayers for him too!

Now I am just waiting for the puffiness in my face to go down...every morning I wake up and hope to look in the mirror and have it all be gone but I haven't been that lucky yet!!!

It wasn't me this time....

oh my husband would kill me if he knew I posted this picture!!! This is where we spent a majority of our afternoon today...The ER! Ross was having chest pains and chills since midnight the night before and the clinic would not take him, they said go immediately to the ER. Thank God it was nothing too serious, but he does have pneumonia. Hopefully Nolan and I can stay healthy and not get it, but in the meantime we are focusing on getting daddy back to good health!!!! So in your prayers, if you could add to get Ross back to good health and fast!!!

Also, on a side note, the nurse called me today and told me that my urine labs from yesterday looked awesome...I had only .5 protein in my urine and no blood. (I usually always have +2) so this was super good news and hopefully yet another sign I am getting into remission quicker than we thought!!!

U of MN

The appointment at the U went really well today. (Besides trying to find the darn clinic) Dr. Rosenberg spent a lot of time looking over my records before hand and seemed really knowledgeable and aware of what was going on with me and my disease.
After our discussion he said that he really thinks we are doing the right thing with treatments and that he would treat me the same way my current doctor is treating me. He also said...and I hold my breath while saying this...but according to my last creatinne lab I am well on my way to remission....My creatinne level was 1.1 which is NORMAL! How wonderful is that?? There are still other tests that I am not normal in, but the creatinne is huge! He does think that this will be a whole year of treatment though and that I might not be in full remission for a year so to be patient. (something I am not....)
The only thing that concerned him really was my biopsy. He said he didn't like that I had so much scarring on my kidneys and wonders how long this was going on and I didn't know. He also talked to Ross & I about "future pregnancies". This seems like a main topic the doctors have been bringing up with me lately!! He has the same thought about this as our other doctors which is that we would be crazy to have anymore. He said that our chances of having multiple things go wrong with the baby or with me are extremely high. We agreed and told him that we were blessed with one healthy, beautiful baby and have accepted that we will not be able to have anymore.
Both Ross and I feel really good after this appointment. We feel really confident that we are on the right road and that things are going to keep getting better. We are really glad we went there today to get confirmation that we are doing the right thing!

What I miss the most....

I miss my hair so much. Vain, I know, but I miss it. and I miss my dimples in my checks when I smile....you can't see them anymore with the puffiness. I miss getting up in the morning and eating breakfast whenever I want instead of around my medication schedule. I miss having energy. I miss running.

No Surgery for now!

Well finally, I think we have good news! I went to the orthopedic this morning and the doctor looked at my MRI results and also got some x-rays done. He said the radiologist read my MRI wrong and I do NOT have a fracture so that was good. He also does not think this is from the steroids, he thinks its just from the years of me running on them and that this was something that has taken awhile to do. The fluid in my knees has gone down too so the only abnormal part was a piece of a bone that seemed to look "loose". He said I can start exercising low impact, no running, but I can do elliptical, biking, walking & swimming so that was good to hear! If I still have pain in a month, I will have to go back and we will look into doing a minor surgery called Arthroscopic surgery. SO...hopefully the pain subsides and I can move on without doing any sort of surgery!

Going to the U of MN for a 2nd opinion MONDAY!

The U of MN just called and they have my 2nd opinion appointment scheduled for Monday with Dr. Mark Rosenberg. I am surprised they got me in so fast but also very excited about it! Hopefully this can put to rest anything that we are questioning.

This Wednesday I also see the ortho so we will find out then what to do with my knees. I have been experiencing extreme pain in my knees while sleeping which is a bad sign I guess since there is no pressure on them. Please pray hard this week that we can overcome this without needing to do surgery or be in a wheelchair or crutches. With an 8 month old that crawls all over...none of these are really something I can do right now!!!

Starting Friday I am being tapered off the steroids, which was wonderful news for me. It will take about a month for me to get off of them, or at least to get to the lowest dose amount. I have heard different things about when my face will go down. Some say not until I am completely off steroids and some say once I reach the lowest dose. I'm hoping it is the second one!

Hoping to post some positive news in these next few days! Please keep the prayers coming!

MRI results

The nurse just called with my MRI results and unfortunately here I am posting bad news yet again. I yearn for the day to post good news, to tell you all I am healthy and well.

I have AVN (Avascular Ostenecrosis) basically it is not enough blood flow to my bone resulting in a small fracture of the knee. Google it if you want to know more. I'm waiting now for the Ortho to call me to schedule an appointment with them. They will have to look at it and decide if I will A.) be put on crutches ...which actually don't think would work since this is in Both my knees. B.) monitoring/therapy or C.) Surgery. I am required to stay off the knees now, except to walk. No more working out.

The steroids are the cause for this. There is a small % of people that this can happen to and go figure it happens to me!

I have an appointment tomorrow with my nephrologist and I will be talking to him about getting off the steroids and also about getting a 2nd opinion from Mayo. I called my insurance company, and I don't need a referral so I'm thinking it's time.....Enough is enough.

Save the date!

2.28.09 5pm @ Rockwoods in Otsego,MN Lupus Fundraiser! Hopefully we can raise enough money for the Lupus Foundation to start a "Feel Good Program" :) Details still being determined but probably will consist of dinner, dance, silent auction, and maybe even a chocolate fountain:) Hope to see you all there! Invites will be sent out closer to the date, but mark your calendars now! If you know of any companies that would be willing to help out and donate items for the silent auction or money towards something let me or Celeste know!

I had the MRI on my knee today and should know the results in the next few days. I've been trying to stay off of it as much as possible and the pain is not getting any better so we'll see.

Started the new drug,cellcept, and so far no side effects that I can really tell which is great! I also started a "Hair repair" system to hopefully grow some of my hair back...hopefully it works and works fast!

Nolan has unfortunately caught the flu and has been sick the last few days, thankfully I have not gotten it! We will all be getting the flu shots soon and hope that family and friends that are close to us will also consider this! We want to make sure we all stay healthy this winter. The new drug I am on does have the possibility to drop my white blood counts so I still have to be very careful about not getting sick.

I also just bought the book "The Jesus Storybook Bible" by Sally Lloyd-Jones. It is a children's story about the bible. I originally bought it for the kids but decided that I should read it first before I start to read it to them. I highly recommend this to everyone, especially with kids. I am really enjoying reading it and learning so much!

A group from my church from back home made me this prayer blanket. I love it and have been sleeping with it since I got it! I believe it keeps my bad dreams away:) and it is my favorite color!

Treatment has changed

I'm not sure if I am super happy or super confused....the doctors decided yesterday that I will stop chemo treatments. My body doesn't handle them very well so we have to move on to the next step. Part of me wants to jump up and down. No more chemo means no more hair loss, injections, 7 hours at the cancer center, no wigs, and a better chance at getting off steroids earlier. The other part of me is weary though because the drug they want to put me on has not been around as long, doesn't show to work as fast (So my whole remission in February might not be February anymore), and if this drug doesn't work...I go back on chemo and start the whole 6 months of chemo over again....Ross & I talked last night about getting a 2nd opinion at Mayo, however that is a whole big ordeal. I called the clinic there and it is a 3-5 day process so we would have to take off work for a week, get a hotel for a week, and get tests done all week long. With our crazy lives right now and with Nolan we just don't know if this could be possible.

I also told my doctor about my knee pain since it is getting worse. She looked at it and I have some fluid in my knees. I have to now get an MRI next week to make sure my bones have not started deteriorating from the steroids. (Apparently there is a small % where the steroids can deteriorate your bones and you will need joint replacement therapy if this is the case). These steroids are so bad for you, I hate that it is the only drug out there right now to treat me this way. I'm suppose to stop running and stay off my knees as much as possible for now. I'm really asking for some prayers on this one. Exercise is how I relieve a lot of my stress and I love to run. I do not want this taken away from me. I feel like my identity is slowing being taken from me. My looks, my body, the things I like to do, my self-esteem. I'm going to be left with nothing but a drug filled empty body pretty soon.

I'm really trying to hold on to my faith as I know God will take care of me and this road he has me on will only make me a stronger and better person.

"So don't be anxious about tomorrow. God will take care of your tomorrow too. Live one day at a time." Matthew 6:34

Unbelievable!!!!!!!!!!!!

Where do I start with this one....When I started getting chemo, I talked to the nurse about losing my hair, etc and she gave me the card of this "Wig" and "Feel Good Program." I called the wig lady and actually have an appointment with her for next week. The extensions are getting to be a hassle to put in and I'm sick of wearing my hair up to hide the balding spots so I figured I would meet with her and see what she has to offer. Then, I call this "Feel Good Program." It is a one night class where they give you $300.00 worth of makeup and show you ways to help you look/feel better while going through chemo treatments. Basically..make you feel better right?? Well..I call and register and they call me back and tell me I cannot attend because I am not a "cancer patient." I told her I was going through chemo though and that the clinic had given me the card. She then proceeded to tell me that this was only for cancer patients and that it is a support "feel safe" thing and that they only want cancer patients there. She then said I should call the Lupus Foundation to see if they will have anything for me. I was appalled. So basically, my disease isn't bad enough to get to use this service. I am going through the same treatment, but apparently I don't "Qualify" for a feel good program. She told me I could talk to her supervisor but at this time I was basically in tears and anger I didn't want to talk to anyone anymore. I don't know if I am being over-sensensitive here or what but I think this is crazy!!!

I also just got off the phone with my nurse, my white blood count has dropped again after chemo even though I got those injections so I will be starting another antibiotic today...great bring on some more drugs for my already messed up body! I am also meeting with my doctor next week to discuss changing my chemo drugs to a different one. He doesn't like that my WBC keeps dropping so much and wants to discuss the possibility of another one. I will have to see what the risks/benefits/etc are to decide if I want to switch half way through. I also woke up at 2:30 to some extreme pain in my kidneys. It has since resided but some pain is still there so they are going to do a urine analysis tomorrow to make sure I don't have a kidney infection. Please pray this is nothing! I haven't ever had kidney pain except when I got my biopsy so this is all new....maybe it's just my kidneys telling them to leave them alone!!???

AMEN!

I have FINALLY reached my out of pocket expense for my health insurance and now everything is 100% covered for me...well until January starts over again. Thank God there will be no more medical bills for the next 2 months!!!!!

My nephrologist has also lowered my dose on my steroids!!!!!!!!!!!!!!! I am so excited about this. This means he is confident that I am getting better and hopefully the lower dose will help some of my facial swelling go down.

Yeah for good news today!!!!

Another round down!

Well 7 hours of chemo and another round is done. Today was exceptionally hard for me for some reason. The time went by so slow and I was so bored. Thank you for all the people who entertained me with text messages:) I told Ross I need a blackberry so I can at least go on the Internet, however....he doesn't agree. (they have no Internet access or wireless..it sucks!) Luckily, the benedryl knocked me out for a good hour. My room also didn't have a bathroom which was unfortunate because every time I had to go to the bathroom I had to unplug the IV thing and wheel it in the hallway to the bathroom. This was very uncomfortable for me to walk through the halls of the cancer center, the youngest person there, and have people stare at me...I think I might request a room with a bathroom from now on.

I am super tired so I will probably go to bed by 8 tonight. I hope I feel better tomorrow so I can go to work refreshed. Getting injections tomorrow to hopefully prevent the low white blood count again so please pray this works and I don't get into the dangerous zone again.

Here is a video of Nolan army crawling. (Ignore Ross on the phone in the background!) He is so fast and I have to always be watching him now. I can't believe he is going to be 8 months old already this weekend!

Here is another video of Nolan saying "Dada" That is all he says now. I am working on him to say "Mama" but every time I say it he says "Dada". Go figure.....

Some good news is always good.....

Ross got a hold of the credit card company and after talking to a few people, they agreed to refund us ALL of our airline points & fees we have paid back to our credit card if we provide a doctors note saying there is no way I can go on the trip so that was good to hear!

Our newest and most random thing is that our house will be going on the market this week! This is a very exciting and scary thing for us! We are very random, I know, and then having a husband who is also a realtor doesn't help! We found a house we love. I dream about it every night. I have visions of the kids running around there and us being happy and healthy there. It's actually really freaky. So, we choose to put our house up for sale and if it sells..well then maybe it's meant to be?? All I know is keeping the house clean might be a pain in my butt!

The last good news is my creatinne lab work this week went way down which is great!! High creatinne means kidneys not working good. So mine going down=something is working hopefully!! This was great news to hear.

I have my next round of chemo on Wednesday this week. Totally dreading it but ready to have another round down and checked off my list!

Nolan is an official "army crawler" now! I will have to take some video and post it on here. It's pretty entertaining. He moves very fast so we now have to gate up the staires at all times!!!

Some people are so stupid!!!!

A lady told me yesterday that my face is so puffy she doesn't even recognize me anymore. Then she had the balls to say, "Well are you working out?" Like implying that my face is fat from not working out! I had to literally hold the urge back to not slap her. Some people are so stupid. (luckily she isn't a blog reader)

I know some people look at me and don't know what to say. Others say "you are beautiful" "I can't even tell" or "Oh it's barely noticeable" and while I appreciate these comments very much, I know they too are not true. I look horrible.

I want to give you all some information on the drugs I take. First of all, I take about 20 pills a day. The side effects of these drugs that I am experiencing are: weight gain in the face...this is water weight from the steroids it is not because I am eating everything in sight and not working out. I eat very healthy and workout as much as I can. I want to clarify I have not turned into a couch potato who doesn't care about their body anymore! Some people can actually develop anorexia from being on steroids as they get to where they don't want to eat so they won't gain weight. I now can see how this can happen. I can't sleep. This is also from the steroids. They make me hyper and basically give me ADD during the day. I do lots of cleaning because of this. Because I can't sleep, I eventually crash and am so overly tired I can't think straight anymore so I usually end up taking some sleeping medicines to get a good nights sleep. I am moody and have seriously...multiple personalities. One thing can just trigger me to go off. Trust me, ask my husband. Pretty sure he is ready to kill one of my personalities right about now. I am losing my hair, obviously this is from the chemo. I can wear my hair pulled back and it's fine but if I wear it down, it's pretty thin so I have been wearing hair extensions when I wear it down. These take me almost an hour to put in in the morning. My house is literally FULL of hair, I can't keep up with picking it up. I have chest pains, still not sure where these are coming from but they hurt and they suck and I wish they would just go away. My stomach is so bloated and is in constant pain. I'm assuming it is from all the medications in my system. So....this is a typical day for me right now ...yeah it pretty much sucks but it could be worse and it is temporarily and I tell myself this daily to get through the day. I have 5 months left hopefully and it will go by fast. I mean..I was pregnant for 9 months and look at how fast that went...I have an almost 8 month old now!!!

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...

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.

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!

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!

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

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!!!!

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!

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.....

Ways I know God is watching over me

I've been trying to think of ways that God has truly shown through all of this.

First, God got me pregnant...fast...something that is usually very hard for lupus patients to do. He got me through the whole pregnancy without a miscarriage, another hard thing for lupus patients. He kept me healthy throughout the pregnancy and when Nolan was born made him healthy and happy!

Second, he didn't let my Lupus flare up until Nolan was 5 months old. Usually, you will flare up immediately after your pregnancy. God knew I would not have the energy to get through those first few months of an infant and yet be going through chemo and other health struggles so he waited until he knew my body was ready to handle the next challenge in life.

Third, he gave me very painful joint pain in July. If I didn't get the joint pain, I would have never gone in to the doctor to get my labs taken. This, I believe saved my life.

This has made me realize to cut out chemicals in my everyday living as much as possible. I will be converting our house into as much organic as possible. I have already started months ago by giving Nolan organic cereal, fruits & vegetables. I started buying more organic foods, soaps, shampoos, and will eventually convert my makeup to organic. I am a true believer that environmental problems are what is causing people to get sick like this. I will also be starting to do some of my own organic juicing.

God brought Ian into our lives 3.5 years ago. When he was first born I remember we all wondered how this could happen and how we were going to get through it. We knew there was a reason for this and knew we might not know the reason for a long time. This might be Nolan's only sibling, and I am so thankful that he will always have him even though we might not be able to have more children someday.

I know this will only make me stronger in the end and I know as these days and nights get long, and sometimes I get sad, I can always think of ways that God is taking care of me and my family.

Kidney Biopsy results=devastating

I got a call from the nurse at 9am today and she told me that Ross & I had to come in at 11 to go over the results. I asked her if something was wrong and she told me that I have an aggressive form of kidney disease. Basically the one thing we didn't want the results to tell us!!!

We went to the doctor at 11 and just got home at 3:30, so nevertheless it has been a long, emotional day for the both of us. We were told a lot of information, lots that went over both of our heads.

I will start on 5 more medications, one is through infusion which I started today. It is a very high dose of prendisone (the drug that doesn't let me sleep). I will get the IV today, tomorrow and Wednesday. After that, I can start taking the pill form. I have the IV in now and am already counting down the hours until Wednesday until I can take this out! I hate having this in my arm.

I will also start chemo next week. This will be once a month. I want to clarify that I DO NOT have cancer. He made this clear to me as I questioned chemo. I should also not lose my hair. Basically this is to decrease the abnormal behavior of cells, instead of actually killing them. The dose is a much lower dose than cancer patients so I shouldn't lose my hair. This is a life saving drug for me right now. One of the side effects can be infertility so that was hard to hear too. However, I think deep down Ross & I both know we are done having children. However, I still don't like hearing I don't have the possibility to have more.

For the next 6 months, I will be taking all these things. The goal is for me to go in remission and for everything to remain calm. We are hoping to preserve what I have left of my kidneys and maybe even make it better.

Transplant is still far from off since I do still have 50% kidney capability. They do transplant and dialysis when your kidneys are completely done working. We are trying to stay away from this.

There are no more tears to cry, instead we have to look at this from the view that it could be worse. There are so many other people out there that are at a worst state than I am. I am so thankful that I am where I am and we caught this when we did. God has given me a house over my head, great family & friends, a beautiful baby boy and plenty other blessings so I cannot be mad at him for not giving me good health. Instead, I'm taking what I can get and still living my life normally. Like my doctor said, "Anne, don't stop living. Keep doing what you are doing. Live a normal life."

I will control this disease, this disease will NOT control me.

I'm home sweet home!

Now that I have all the equipment off of my hands, I can actually type! We got home from the hospital today around 11am. I was begging them to discharge me! I just wanted to be home. I didn't get much sleep since nurses were coming in every 2 hours to check my vitals. It got pretty annoying!

As far as the biopsy went, it went pretty good. The only part that really hurt was when they stuck the needle in to numb it. After that, I didn't feel pain, just pressure and every time he took a piece of my kidney I could hear a "pop." This was very disturbing! By the third time, I was sweating and feeling ready to pass out so they had to quick give me an IV of fluids. This helped a lot. The whole procedure only took 15 minutes.

I then went up to my room to relax. I had to lay flat for 4 hours. I had to go to the bathroom so bad but held it in so I wouldn't have to go in a bed pan:) After 4 hours, my vitals were good and there were no signs of bruising at the site so they let me get up. The pain was pretty intense when I got up so they put me on some pain medication. Ross brought Nolan to see me, that made my day:)

As far as now, I am still in some pain but it is getting better!! Today I have been sleeping most of the day. I know sleep is the best medicine for healing so I'm trying my best to just leave the messy house and things that need to get done and take care of myself! I am on a 20 lbs weight restriction (luckily Nolan is just under 20lbs:) and I cannot work out for 2 weeks (This is going to drive me nuts). Results should be in on Monday so we will await those. Thank you all for your thoughts and prayers, it went a lot better than I thought!! Now, we just have to pray for some positive results!!!

Biopsey Done

Went fine, I'm just recovering in my room. should be discharged tomorrow, results monday. Will write more about it later.

Why are doctors so darn expensive???

We are starting to get medical bills weekly now and I am shocked to see that everytime I meet with my Nephrologist, kidney doc, it costs $500!!!! The labs I am getting done weekly are also costing about $500! My insurance company is going to hate me. Luckily we only have to pay 90% now that I reached my deductible but still...that alone is $50.00 each! This really makes you realize how important it is to be healthy and to not take it for granted.

I finally got up to running my 3 miles yesterday. That was the first time I did that since before Nolan was born. I was very happy about this. My joints were pretty sore afterwards but I was glad that I pushed my body. I know exercise is huge in staying healthy for me.

3 more days until my biopsy...I'm starting to have bad nightmares and I hope it is just all in my head. I just want it over!!! Needles in my back just give me the quivers!!!! Please keep praying!!!

Last week's lab results

Labs from this week didn't look as good. My Creatinine is back up, higher than it's ever been and my BUN (Blood Urea Nitrogen), a waste product from protein that is measured in the blood is the highest it has been also. The nurse said it's a good thing I'm getting the biopsy this week. We will hopefully have some answers soon. The medicine I'm on apparently isn't doing it's job exactly. My iron levels are super low too so I'm starting an iron supplement this week to help with my hemoglobin. Please keep me in your prayers this week, I'm very scared about the biopsy and the results. Thanks!

Survived my first nights away from Nolan!

Well..both I and Nolan survived the 3 nights away from each other:) I think I ended up missing him more than he missed me though! The business trip went well we got hooked up with a sweet hotel room...Gotta love the flat screen!!!

It was super weird to have "free" time after class. I spent most of my time reading gossip magazines.....

and even had enough energy to use their super nice gym! (Picture from after my kick butt workout!)
I now have all the sales skills to sell insurance....scary. It was a great class though, glad I went. Now, I have much unpacking to do!

A weekend at home for once!

Had a pretty good weekend. First weekend we were home all weekend in a LONG time. Today I am packing and getting ready to head to Madison, WI for work. It will be my FIRST time leaving Nolan overnight...and for 3 nights! (I'm a little nervous about this, but know he'll be fine.)

Nolan had sweet potatoes for the first time this weekend...He seemed to enjoy them but wondered at first what the heck I was feeding him!


We also enjoyed some fun pool time....




Nolan has also mastered rolling over and the second we put him on his back, he is instantly on his stomach. I have a feeling he might be crawling sooner than later as he gets frustrated easily that he can't move and will try to "inch" his way around.

On my health, as I mentioned earlier, I stopped the prendisone because I was so sleep deprived. I am noticing that my joint pain is coming back so I might have to start taking a low dose again. I'm seeing how long I can hold out though and just using Tylenol for the pain right now. My body seems to be handling the Lisinopril and Hydroxychloroquine fine, they just make me very drowsy! I took 3 naps yesterday!!! I'm sure once my body gets used to them it won't have that much of an effect..hopefully!

Well..off to pack and enjoy the rest of the day with the family!

Sneak peek at some of Nolan's 6 month pictures!

Nolan did so good at his 6 month pictures! Here are a few of my favorites. He was all smiles for the photographer which was great!!!

I decided starting today I was going to stop the Prendisone on my own. I need to get back to getting some sleep. Hopefully since I have not been on it that long my body will not have "with drawls" from it and will continue on like nothing happened. I'm crossing my fingers this happens!

Biopsy is scheduled Finally!

Friday, August 22nd. It will be nice that I will have the whole weekend to recover and shouldn't need to take anymore additional days off of work (besides Friday).

The nurse described the procedure a little better too. They take a small needle through my back into the kidney and take out 3-4 samples. They will be looking for Lupus in general, but then other unusual scars, deposits, etc. I will be completely awake for the procedure, but will get a local anesthetic before the needle is inserted. The total time on the procedure should only take about hour, however I will be required to stay overnight in the hospital so they can watch for any bleeding from the incision site. I will have to be on my back for the next 24 hours so laying low will be what I do all weekend that weekend I guess. (BORING!) I think Ross might be staying with me in the hospital that night and my mom will come to take care of Nolan.

Sleep is overrated

It is 1:30am and I cannot sleep..again. This is getting really old! 5:30 comes way too fast. I think tomorrow I might start taking a sleeping pill to see if that works. 4 hours of sleep a night just isn't enough for me these days!

On Sunday I will be leaving for Madison, WI for a class for work. It will be my first time leaving Nolan overnight! I will be gone until Wednesday. I think Ross might be a little nervous about taking care of both boys himself. He keeps asking me when I am leaving and when I am coming back. I'm confident he will do fine though. I'm sure they will be eating chicken nuggets and pb & Jelly for dinner the 3 nights though!

Still waiting for the nurse to call me back to schedule my biopsy. I'm getting annoyed it is taking her so long to call me back. I think I might try calling her again tomorrow. I want to get it scheduled and over with!

I had a really good workout tonight finally. Usually I can only run a few minutes before my knees are killing me and giving out. I was able to run 15 min. straight this time! That is HUGE improvement for my body! Now, if I can only get back up to 30 mins. I would be happy:) I have a feeling that 10K I wanted to run this summer will not be happening.

Enough rambling, I should try to see if I can go back to sleep. Good night.

It is really August already?

So tired after this weekend. We were at a wedding in Brainerd and we brought Nolan, which makes it ten times harder! (see pic from wedding to the left) Luckily, Nolan let us sleep in until 8:15am this morning! I was very grateful for that! The Prendisone lower dose is not showing much of a change on me. I'm still not sleeping well. Hopefully next week when I go on a lower dose I will be able to start sleeping better. I'm so exhausted!

I got a few emails from people asking why I don't have pictures or talk about Ian in my blog. As much as I love Ian and think of him as one of my own, I chose to not involve him in my public blog since this is a public blog and you never know who is reading it...with all that's going on with that whole situation I think it's best to leave that part out:)

Hoping the nurse calls me this week to schedule my biopsy I'm anxious to get that part done! Hopefully tomorrow I can update with a date!

Positive News!

Met with my rhumatologist this morning and my labs looked better today! Yeah! That means the Prendisone is doing it's job of keeping my joints and kidneys from flarring up! She is even going to start me on a lower dose so I can hopefully get completely off of it..that is my ultimate goal... to not be on any drugs. This drug also has side effects I don't like, like weight gain and not sleeping well at night so the less I can be on this drug the better! However, I am thankful there are medications out there that are keeping my kidneys from failing and I guess no sleep and some extra weight are a small price to pay than having kidney failure.

She also gave me more positive news! She told me that I do have a chance of my kidneys being back to 100% capability (or close to) someday and she even said granted my biopsy looks good, and I don't need chemo, we could maybe still have more kids someday! (Not until I am in the inactive stage of this disease though and have talked well through it with many professionals...definetely something we won't be discussing for awhile...however very positive news!)

She did put me on another medication called hydroxychloroquine which is suppose to also help protect my kidneys from any future flare ups. She said this drug has very low side effects/risks/etc and most lupus patients are on it. As much as I hate drugs, I agreed to take it out of her recommendation. I'm starting to feel like an 80 year old woman taking 8+ pills a day, but have hopes that someday I will be down to zero or even just 1!

So now I am just waiting to schedule my biopsy and take things from there. Hopefully I will be able to post more positive news in the coming weeks! Thank you all for your prayers and support, there is a light at the end of the tunnel:)

Where do I start?

I've decided to use a blog to write about my new struggles with my autoimmune disease, Lupus. I'm hoping to use this as a tool of therapy and support and also a way of keeping everyone up to date on my health status. I have choosen to name my blog "Perception is half the battle". I choose this name because this is how I look at life. Bad things happen to good people all the time, it's how we choose to deal with these curves in life and perceive them. As long as I keep a positive attitude and perception, I'm going to get through this minor curve in my road of life.

So to start, I was diagnosed with Lupus about 5 years ago now. I was experiencing some joint paint and went in to get it checked out. The doctor referred me to a rhumatolgoist and from there I got some tests done. I don't think I will ever forget the day that the rhumatologist said to me "I think you have Lupus." At this time I had no clue what Lupus was but I was determined to live my life normally and not let this affect me. The doctor suggested I get on a steriod drug called Prendisone. I decided at this time since the only thing affecting me was my joint pain, I just wanted to get on a anti-inflammatory drug and then get off of it right when the joint pain stopped. The doctor was very unresponsive and rude. I took the anti-flammatory until my joint pain stopped, just a few weeks later. I never returned to see this doctor again. Throughout the last 5 years I have had no joint pain. I have experienced a lot of bouts of sickness, ranging from really high fevers to just being extreamly tired.

In May of 2007 I found out I was pregnant and realized I needed to see a rhumatologist again to make sure I could continue with a safe pregnancy for both I and the baby. The new rhumatogist was wonderful and comforted me by saying I would have a healthy and safe pregnancy. Though I was considererd high risk though the 9 months, I really did have a very easy & enjoyable pregnancy! Towards the 8th month my labs, blood pressure, and protein in my urine kept getting worse so on February 11th, 2008 my doctor diagnosed with me pre-elclampsia and decided to induce me 10 days early. The next day, Febuary 12, 2008 at 12:00 PM Nolan Aaron Burau was born weighing in at a perfect 7lbs 5 oz and 20 inches long. The doctors warned me that most people with Lupus will experience a flare up after delivering so I was preparing myself for this. However, it seemed to not happen. My labs were looking really good and I was feeling great! Then, around July 2008 (yes this month!) I started to get the joint pain again. The pain was more intense than I remember it, causing me to have to literally force myself out of bed in the morning. I went back to the rhumatologist to do more labs and to hopefully get on an anti-flammatory. I was just assuming it would be fine and the pain would go away again, however the results were a little more shocking. My kidneys were indeed struggling by showing large amounts of creatine and protein in my urine. The doctor immediately put me on Prendisone and ordered me to see a nephrologist (Kidney doctor).

July 28th, 2008 I get my 24 hour urine analysis back and my kidneys are only working to 55%. I will be scheduling the kidney biopsey and starting the Lisinopril drug. There are a lot of unanswered questions right now, a lot of things going on in my head, a lot of what if's. I do know though that my perception of this is half my battle and I am thankful everyday I can go home and look at my big dimple smiling baby and know that when I do, all my worries go away.