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!