No, All This Healthy Food Didn't Kill Me...

I've been getting a lot of "flak" lately from my family about not keeping up with my blog. I guess I didn't realize anyone was really reading! Just kidding! 

Not to make excuses, but in my last post I talked about beginning this new journey of healthy eating. And that is exactly what has been taking up a big chunk of my time! 

I am a food and nutrition researching FOOL! Who knew how food heals our bodies could be so fascinating?! I am loving every minute of it! My family maybe not so much! There are times I think that they think I've gone into lupus psychosis. (that's yet another lupus thing I never want to face). Not only do I love learning about these things because I know God is going to continue healing me as I treat my body the way it should be treated, but also, because I know he is going to help use this experience of healing in my life to help others. Others who are stuck relying on medications, living with disease and sickness when things could quite possibly be reversed! 

Don't get me wrong, I am all for medication when necessary! But WHY rely on medications that bring along more negative side effects than positive action? Especially, when you could so easily try putting the RIGHT things in your body to heal it first!

For example, my mom. She goes to the doctor for high blood pressure. What is the first thing they say? Cut out salt, exercise and lose some wight. That's not easy. So they get put on medication. Over the years my mom has been off and on her medication. Off when she eats the way God intended her to eat! BINGO! Her BP is normalizing so why need the meds? Continue with routine doctors visits of course to monitor. Simple as that. 

But is it really that simple? No.

Pop a pill each morning 
OR
try cutting out salt, processed foods, eat more fruit and veggies, whole wheat, cook more, etc.?

I may have said this once before, but I have been on Cellcept since April. Some pretty hefty doses. I need to point out though that sometimes medications are necessary for life. This medication is VERY important in transplant patients. It is also used to try and control lupus. My thought on this is that if I can control my lupus without the drug, why not try that first. Yes, I may realize down the road that I do need immunosupressive therapy again. But that is not going to be my fist line of treatment! 

This is why I find popping a pill is NOT the easy way out:
 

And that is just the tip of the iceberg on the side effects of this drug. I'm not even going to list the other negative side effects found in my 4 other medications. 

I think you get the point...

This journey has already been amazing! I can't even begin to list the people who have been encouraging and supportive of me!

My beautiful friend Rachel and I decided to start this journey together! She does not have a chronic disease like I do, but is as fascinated as I am with whole foods and healing the body! It's been great to have someone as passionate as I am to join my journey. 

I will be continuing to post more about this new life plan and how the process is going. And, I promise to be better at keeping up with things! ;) (family!!)

This is NOT a diet. And I will never return to eating as I did. This is a new way of life for not just me, but my family. It is a lifestyle, but not one that I am boasting or bragging about. That is never my intent. 

It is not about what others think of me. Too green. Crazy. Tree huger. 

The is about saving my life. Period. 

 

Days Like These, I Love Seeing My Doctor!

So, I had an appointment yesterday with my kidney doctor. I hadn't seen him since August. It's nice that we keep going longer and longer between appointments. That means I'm improving! Woohoo!

I had labs drawn last week, as I always do the week prior to my appointments. Of course, I looked up my results that day. I was pleased to see they were improved from last time. My urine protein level had decreased by HALF since August! 3.3 grams of protein down to 1.5 grams. YAY! 

As my doctor sat down to talk with me, I asked him just how sensitive my kidneys were to further damage. I remembered at the beginning of my treatments, he mentioned how my kidneys were scarred and that they would be more prone to damage from here on out. He told me today that no, my kidneys are not scarred like he initially thought! He said they were not any more suseptable than before I was diagnosed. Meaning, I don't have to worry that they will be damaged again. Of course, there is always a chance they could be, but it is not any more likely than if any other body system was attacked by lupus.

Here's where it gets crazy awesome! ;)

He told me that yes, at the beginning of my treatments, he thought for sure my kidneys would be scarred and things would end up worse. I said, "oh?" He then proceeded to tell me that he was surprised that the steroid treatments had worked. He told me that after my biopsy results came in, and he saw how bad the damage was, he really thought that I would have had to undergo dialysis. "Thank you Lord!" I said out loud. "You must have had a lot of people praying for you." He said. My response was, "oh yes, I did!"(and do! Thank you all!)

Our God is so good! 

He is a healing God. 

My doctor decided I could half my doses of prednisone and cellcept, but stay on everything else. I was hoping to atleast remove SOMETHING from my med list. But that's ok. I'm very happy with that! ;)

I'm looking forward to the weekend! Fun things are planned and I am feeling good enough to participate! 

Here's to the weekend and seeing the good in me. Where I am, from where I have come! 

Thank you Jesus! 

Make it a great weekend and bless someone with the grace you've been given!  

Pills, Pills, and More Pills. Part 2

Gotta find it fun somehow! ;)

After receiving my med list from my nephrologist, Jared and I spent the next 3 days trying to create a schedule for my meds(he is so great at stuff like that). It was CRAZY to try and figure it all out! Here is kind of how it went:

Cellcept, that I have to take twice a day, has to be taken on an empty stomach 2 hours after eating and an hour before eating. It cannot be taken within 3 hours of the zantac. Prednisone needs to be taken with a meal and is best to take in the morning. Zantac should be taken with the prednisone first thing in the morning so it will help with the side effects. Lasix, taken twice a day in the beginning, needed to be taken sometime in the morning and afternoon, just at the right time so my swelling wouldn't get out of control, but not at bedtime or I would be peeing ALL night! Bactrim MWF whenever. Tums same. Lisinopril best at night. 

WHEW!! This literally took days to get right! I finally have a pretty good routine! But let me tell you, it sure does stink to have a pill control when you can and can't eat!!

Through this, I have learned just how important it is that when I send patients home with their med list, I need to give them details and make sure they understand things completely!

I'm not blaming anyone, but want to let you know how important it is that we know the details of the medications and treatments we take. No doctor, nurse, or PA told me about side effects, interacting medications with one another, when to take them, when not to take them, etc. I'm glad I wanted to know the details of what I was taking. KNOW WHAT YOU TAKE, HOW TO TAKE IT, PRECAUTIONS and SIDE EFFECTS OF YOUR DRUG! Because, someone may not tell you. 


I had some anxiety (thank you again prednisone)about how the heck I was going to remember taking all these pills! One evening, when I was in denial about my disease, I and wanted to be "normal". My mom, grandma, sis, aunt, cousin and I went out to a movie and dinner. It was a wonderful time! On our way home, my sis INSISTED we go into Walgreens and buy a pill organizer! I don't know what I would do without my nifty organizer divided into AM and PM! Plus, I can remove a day and put it in my purse if I'm going to be out when I need to take it. I really should have got the one for Morning, Day, Afternoon, and Evening because I was taking pills at least 5 different times a day in the beginning. I refused to go that far. The thing was the size of a laptop! Lol.  

My glass cabinet has now been converted to my med cabinet. And this is how I spend my Sunday afternoons; watching the Browns and getting my pill box together for the week! Lol. What an exciting afternoon! ;) The little red thing in each photo is a pill cutter from my grandparents. They had an extra one laying around and I needed one! Hehe. 

As much as I HATE taking pills, I am glad they are working and I know this is just for a time. We are so blessed to have insurance through the hospital! For example, here is the label from one of the meds I take:

That is for a 2 month supply. Is that not crazy?! I told my doctor how much insurance saved me and that I still had to pay close to $300. He was taken aback. Speechless. I asked him what people were supposed to do if they didn't have insurance coverage. He said he didn't know. I said, "well, I wouldn't be taking it!"   

My goal is to get off ALL medications and try to control my lupus as natural as possible. I pray I won't have to go through much trial and error. I try not to think of the long term side effects that some of these medications have. Because quite frankly, they scare me. 

Pills, Pills, and More Pills. Part 1

The week after my IV steroid treatments I had a follow up with my regular nephrologist. I hadn't seen or heard from him since my biopsy because he was on vacation right after the procedure. I dropped Elin of at my sisters house and headed to my appointment. Jared of course wanted to come and hear what he had to say. I was NOT feeling better at this point and wanted to know why. I had that huge dose of steroids that weekend! Why wasn't I feeling better!?! 

I was seeing my nephrologist every 2 weeks then and having blood work done every week before the appointment to check my kidney levels among other things. Now I go every 6 weeks, yay, I've made progress!

He started discussing my progress and my treatment plan based on my lab levels and controlling the lupus. I told him my blood pressure had been running high (which it was that day at my appointment).

He started telling me about the meds he wanted me on. Then said, "umm, I better write these down." Oh boy, I knew I was in for quite the med list!

Prednisone 60mg daily, taper to 50mg daily. As I posted here on Monday, the prednisone is used to reverse the kidney damage. You MUST taper off steroids. I am on 10mg now with pretty minimal side effects compared to when I was on 60mg. I cannot WAIT to get off it!

Cellcept 250 bid (this means twice daily) week 1
         500 bid week 2
         1000 bid week 3 = This is my current cellcept dose.
I have been on this dose since May. When my doctor first told me he wanted me on this drug it had sounded very familiar to me. I quickly remembered having a patient that was taking it who had just received a liver transplant. This drug is given in patients who receive transplants to keep their body from rejecting the organ. I was a little confused as to how this was going to help me. Was he preparing me for a kidney transplant? No.  

Basically, cellcept is an immunosuppressive. In lupus patients, during a flare, the immune system is going CRAZY, as in, hyperactive. The tiger needs tamed!! That's where cellcept comes in. For all my medical buddies, here is more detail on cellcept: http://www.drugs.com/cellcept.html

Bactrim DS 1 tab MWF. This is an antibiotic taken 3 times a week as a preventative to infections. I take this because both the prednisone and cellcept are suppressing my immune system, making me VERY prone to infection. So far, during my treatment, I have only had ONE infection in June. My doc quickly put me on another antibiotic for 5 days and the cold only lasted about a week. As soon as I show ANY signs of infection; fever, chills, green/dark snot or phlegm, sore throat, etc. I MUST call him right away and get put on yet another antibiotic.

Lasix 40mg BID There were some days where I really wanted to overdose on this med. Not to kill myself, but because the swelling was SO bad and painful, I wanted it GONE! 
I am not on this anymore. I stopped taking in June because my swelling was GONE!!

Lisinopril 10mg daily. I had to increase to 20mg because my BP was not controlled on the 10mg. I'm only on 5mg today! Yay! (I'm still on a higher dose than my grandma though! Ugh! Lol) My BP became elevated due to the prednisone, but more so from the kidneys not doing their job.  

If the flow of blood through the renal arteries decreases for any reason, the kidneys can be tricked into thinking that blood pressure is too low. The kidneys detect this decrease and release the hormone renin in an attempt to raise blood pressure and restore normal blood flow. Problems arise when the decrease in blood flow is not actually caused by low blood pressure. In these cases, the kidneys end up raising blood pressure to very high levels in order to push more blood through the narrowed renal arteries. http://highbloodpressure.about.com/od/associatedproblems/a/renovascular.htm

Zantac 75mg daily. This was a requirement for me every day! The prednisone ate up my stomach so terribly! The pain was unbearable at times! Since I have only been on 10mg for about a month now, I do not take is every day. Still, there are days that I feel that pain coming in the morning and have to take one. Nothing compared to before though!

Tums ES 600g BID I took this to help with the above ^ problem. Stomach issues. But also, to increase my calcium level from the prednisone that was depleting me of it. 

As my doc was going over all the meds, adding and adding, I could not help but become overwhelmed. My eyes filled with tears as I thought about how quickly my life was changing. From never needing any kind of medication to a bazillion pills! (Ok, exaggeration). Not only was I overwhelmed with the pills, but also his explanation of the kidney damage and how bad it really was, that I was going to be off work for months, and that the lupus was a pretty big deal, more serious than I thought. Hello denial? Maybe. I asked him why I was feeling worse and not better after the IV treatments. He told me that it just wasn't that easy for my kidneys to heal based on how badly they were damaged. 

Because of my amazing God and wonderful family and friends who have encouraged me, I am not going to let this disease define me. Who I am is not found in a disease, but in WHO I am in Christ! I am His and He is mine. No one can take THAT away! 

Think about your current struggle. Are you allowing it to define you? Let Him have it!

"Who I am is not found in ________, but in who I am in Christ!"

Who are we in Christ?  

I have the mind of Christ (1 Corinthians 2:16; Philippians 2:5).
I can do all things through Christ Jesus (Philippians 4:13).
I have the peace of God that passes all understanding(Philippians 4:7). 
I am more than a conqueror through Him Who loves me (Romans 8:37).
I am the light of the world (Matthew 5:14).
I am forgiven of all my sins and washed in the Blood (Ephesians 1:7). 
I am healed by the stripes of Jesus (Isaiah 53:5; 1 Peter 2:24).

I am greatly loved by God (Romans 1:7; Ephesians 2:4; Colossians 3:12; 1 Thessalonians 1:4).
I am strengthened with all might according to His glorious power (Colossians 1:11)
I press on toward the goal to win the prize to which God in Christ Jesus is calling us upward (Philippians 3:14).
For God has not given us a spirit of fear; but of power, love, and a sound mind (2 Timothy 1:7).

It is not I who live, but Christ lives in me (Galatians 2:20).

...and oh so many more here!