The last time I wrote on here was on June 1st. That is almost a decade ago.
My old Dell laptop which has been dying for the past year, is now beyond repair and needs a replacement. It’s so hard to type on this keyboard. I will have to stop using it. I want a MacBook Air…let’s see how long it will take me to get one. In the meantime my friend has a keyboard I can connect to my iPad by Bluetooth. Bye, bye, Dell. You have served me well but it’s time for us to part ways.
Ataxia and Riluzole.
I started taking a new medication for ataxia called Riluzole on May 27th. In some ataxia studies, patients taking Riluzole showed some improvements. I don’t really know what they were. LOL. Something about delaying the progression of the disease.
My neurologist said I should start taking it so I did.
First, my body is very sensitive to almost any drug. I do not smoke and can’t drink coffee past noon or I won’t sleep. Neither have I tried any drugs.
My only relationship with medicine is taking pain killers that work in 20 minutes.
Riluzole is not similar to a pain killer.
After a week, I started feeling extremely dizzy and had extreme muscle weakness. I could not walk.
This is the worst the ataxia has been.
So I couldn’t walk, my head started spinning without notice, I was itching, I was dizzy and felt like fainting; it was the worst. I googled and watched a million YouTube videos and although no one directly addressed Riluzole, the gist of the messages was that your body will take long to adjust to a drug and you need to drink a lot of water to pee the drug (my friend with a PhD Christian told me the only way your body excretes a drug is by peeing). So you have to drink a lot of water.
In one video, a patient said that the more effective a drug, the worse the side effects.
The month of June was spent indoors because I did not want a fainting spell to come over me in public. I was house bound.
I was also overexerting myself with my numerous projects, like trying to help my relatives in Kenya, but God has a way of forcing me to listen to Him.
“Could you rest?”
I did that, drank my water, exercised for 30 minutes every other day and just shut everything down.
Social media, blogging, meeting people for coffee etc.
I went for a wedding on June 17th and was so weak and had to be supported to go to the loo etc. It was a horrible experience for me and I should have just stayed home.
Highlights of the past few weeks
The editor of the leading newspaper in Kenya asked me for an article on June 23rd. I was featured on The Nation newspaper on July 8th. It’s a big deal in Kenya. My phone rang off the hook that day. Geez what about the day I get a writing contract for a million dollars? LOL.
Someone told me yesterday that a particular radio station wants to interview me. I have no clue what revealing my diagnosis in March will mean and also have no idea what doors will be opened by The Nation article. They actually paid me. A first in Kenya.
I also spent the 7th July weekend at my friends Melissa’s apartment. I borrowed her MacBook and could not believe how easy it was to use. Compared to typing on this old machine I got for free.
I have to buy a MacBook because it will make me so productive; I will finish 3 manuscripts a year. LOL.
Melissa is also a great cook. I was eating without a care until my niece told me I’ve added weight on my face this Friday. My carefree living is over.
Melissa has been a great support at the worst point of this ataxia journey. She holds my hand for support and acts like there is nothing wrong with me. Meanwhile I could not walk.
Something weird happened, Riluzole stopped giving me side effects as from Saturday July 14th.
You don’t understand how I dreaded taking a single pill because I would start feeling groggy, my head would ache, something. Something bad would happen. It’s been 3 days, I’m so happy. There’s actually light at the end of the Riluzole tunnel.
Anyway the greatest lesson God wanted to teach me was how to be still and let him be God. I’ve been waiting on God for several years for several things and I learnt something valuable about the wait this June.
I’m writing on that next. It’s going to be a series.
My relationship with God is at the core of my blog and I could not handle so many things in my life without Him.
I thank Him for the past month and for Riluzole not making me groggy anymore.