Another season of change. Again, I'm being really transparent here- so please be gracious to me as you read.
Although I was experiencing little victories with driving again and being able to do a little more around the house. I was really coming to terms with the fact that my condition wasn't improving at the rate I would like it to. I had decided it was time to break the relationship with the toilet and go see a urologist about my severely overactive bladder. I missed out on living and going out and being around family and friends for far too long.
So, on October 10th I broke down and went and got a catheter put in. I know this date because I was looking forward to it for a very long time.... We were going to go see Lecrae in concert and without getting the catheter, it would not have been possible for me to go.
I was sad that the condition of the m.s had gotten this bad, but was so looking forward to living again!! We had a great time and I cherished my new found freedom.
That next week, it was time for me to head to to my Neurologists office to have my second dose of Rituxin. (low dose chemo)
Hmmm.... Let me think. Nope. Not gonna do it!
So, I canceled the treatment and had a follow up visit with my doctor. He knew how terrible I did after the first round of treatment and together we determined it was not the course of action we were going to take.
At this point, I've run out of options.
From the time of diagnosis back in '93 I have been on so many different medications to try to halt disease activity with no luck. Copaxone, Rebif, Tysabri and now Rituxin.
So my doctor said at this point, the only option is to go back on Tysabri.
This medication is a once a month infusion.... but it carries a great risk-PML. A very rare and debilitating even deadly brain infection.
I carry the JC anti virus that makes me susceptible to it too so my risk of contracting PML is greater.
My neurologist could sense my hesitation so he then proceeded to tell me that there is more testing that can be done to find out my JC virus count to know my risk factor of contracting PML.
So I had blood work done to find out my counts.
I really didn't want to go back on this drug. so I prayed. Fervently everyday several times a day -asking God for His will to be done and to give me wisdom on making the right decision.
I felt in my spirit, that I was to take control of my own health through diet. I experienced tremendous results when I was on TAIslim- a clean diet- but had to stop due to my overactive bladder Cause it pretty much was a liquid diet. (Ok yes, I had the catheter now but had to follow the prompting in my heart)
Anyway, paleo was on my mind again. The Lord impressed upon my heart that He's already given me wisdom on what to do and that I just need to practice discipline and obedience to do it.
Well the night before I went into my doctors appointment to get my test results, I got a text from my aunt in North Carolina.
She proceeded to tell me about a Christian woman she met at the park that day and had told her about me and my struggle with m.s. They exchanged numbers to stay in touch with each other.
That evening, the woman sent my aunt a text stating she couldn't get me off her mind and wanted to encourage me to look into this. Followed with a link.
http://paleozonenutrition.com/2012/02/08/a-new-experiment-dr-wahls-super-nutrient-paleo-diet-9-cups-veggies-a-day/
I couldn't believe it! Just one more confirmation that I needed to follow through with Paleo. The Lord leaving no room for questions.
So it was clear; I was not gonna do further treatment regardless of what my neurologist says. So once again back to prayer that the Lord would go before me at my appointment and make this decision easy for me-that my Dr. would respect my decision and not try to guilt me into treatment.
The next morning I go to my Dr. appointment and my Dr. proceeds to read my bloodwork concerning the JC virus counts. Come to find out my counts are way over what would be considered safe to be treated with Tysabri. So my Dr. said, really as of right now, we have no options till maybe some new drugs come out in 2015. So for now just hang tight.
What???!!! Are you kidding me! This was amazing how the Lord removed all hard and uncomfortable decisions from my plate. And that I wasn't left alone to fend for myself. The Great Physician had a prescription that he already wrote on my heart!
So that day, I ordered Terry Wahl's book titled The Wahls protocol. It arrived in two days and I got to reading! It was amazing the information I was finding out.....but still, this was not gonna be easy. Thankfully, Adam was fully on board and very supportive. He was gonna do this with me. I felt very positive and excited to see how this was gonna transform my health. Actually, Our health!
I was so excited! (ok and really nervous.) But, I was ready! I was in the valley feeling defeated for far too long and I knew the Lord was not gonna leave me there. He's too good and has said in his word in Jeremiah 29:11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you a future and a hope"
I was excited to see how the Lord was going to work in and through our discipline and obedience to what he asked me to do. Not just once but 3 times.
We started phase one wahls paleo on October 19, 2014.
We we're prepared this time. We cut up all our veggies for the week and that was definitely a step in the right direction. Preparation is everything so we were already feeling better going into this than we have before.
Also, our minds were in a different place. We were going to rely on the strength of His word to get us through the temptation to give in and fail. We were ready for change and to experience health like we never have before. I owed this to myself and my family. Our prayers every night were;Lord please help us to succeed at this. We want health. I want healing. I want to be an active part of my family again. I want to be used to inspire and encourage others all to the glory of God. Give me purpose Lord, show me what the calling of my life is.
So before we began, I noted down my baseline so I could see how I was improving.
Oct 18, 2014
Catheter-severe loss of bladder control
Swollen feet
Left hand clenched in
Severe Muscle spasms and stiffness
Clonus (tremors in both feet)
Cannot lift my arms above my head
Drop foot in both feet (more on the left)
Extreme Fatigue especially after using arms
Arms are painful and go numb
Cannot take a shower/wash hair
Cannot dress self properly- need help
Cannot put shoes on (well shoes at all i have to wear slippers.)
Cannot clip/ reach toes
Cannot zip or button
Cannot open jars
Big forks/big spoons are too heavy
Have to hold my right hand up with my left to put on my make up
Same thing with filling my water bottle up at the fridge (have to hold my arm up with the other)
To brush the back of my hair I have to put my left elbow on the counter to hold my head up.
Extremely dry skin
Dry/itchy eyes
Sex life... Hmmm what's that?
Snore in the night
Sneeze every morning when I wake up
Have to brush my teeth with my elbow on the counter
Cannot bend over without spamsming
(almost fall out of my chair)
Can lift my right leg up and out forward. But there is No movement in the left leg.
Left shoulder pain cannot lift it higher than my ear.
Short and long term memory loss. This is why I cut you off when we're talking because if I don't say what's on my mind I will forget it.... my sincere apologies... really, I hate this about myself... It drives me bananas (yes i just sang Gwen Stefani's song to spell that corectly!!! Lol! )
Disfluencies in my speech
Cannot cut my food. Adam has to cut it up for me right along with the kids. and even sometimes feed it to me if my fatigue is too bad
Cannot do Quincy's hair at all.... ponytails and braids..... Out of the question.
Ok there it is- baseline. probably forgetting a few things but at this point- meh.
We were off to a great start! By day 4, I was reeling in excitement! Here's my journal post from that morning.
Oct 23, 2014
Day 4
Here's what I've already been able to accomplish today:
was able to bend over and pick things up off the floor without having a single spasm.
put my jacket on all by myself and zipped it all the way up
put one of my slippers on.... . Quincy had to do the other one.
put the clothes in the dryer and started it. Actually did 3 loads (not folded yet) This requires standing- mind you!!
Washed all the pots and pans by hand
finished loading the dishwasher and started it
As I was coming out of the bedroom my pee bag got scraped against the door and it opened up and pee went all over the floor in the hall. (good thing there wasn't a lot :) )so I got a towel- got it all cleaned up. then I mopped. and not just that area but the whole hallway!
It's only 9:47 a.m.! Usually just getting the kids ready for school and driving takes all my energy and I would have to come home and rest after.
By the end of the day I still had energy and cooked dinner. Cut asparagus and cooked at the stove sitting straight up did not have to lean my head on my left hand!
Driving was a piece of cake today too. My arms never felt fatigued.
I put stuff away in high cupboards above my head with no spasms in my legs or back.
I could reach all day without spasming
AWESOME!! Praise to you Lord! Thank you for an amazing day!
I couldn't believe the improvements I was experiencing in such a short period of time. Adam was ecstatic and I remember him telling me how proud he was of me. Awww.
I was seriously hoping I was transitioning out of the trials of the year of perseverance and was experiencing the upside of what perseverance could be in my life through obedience and discipline and hoping that since the year was coming close to the end, maybe the Lord was starting to prepare me for my new spoken word for the upcoming year..... Could it be???
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