Of rodents and multiple sclerosis
“Despite all my rage I am still just a rat in a cage..”
Bullet with Butterfly Wings, Smashing Pumpkins
According to the Chinese zodiac (and no, I didn’t just have Chinese food, that is one take out I can avoid as not being worth the calories, probably because of all the vegetables and bean sprouts,) I am a rooster.
This was surprising to me as I don’t feel like a rooster. Unless I happen to be one of the colorful Portuguese roosters that are symbolic of justice and of, well, Portugal.
No, lately I have been feeling like a rat. This rat like feeling started at the end of 2013 when I agreed to participate in an MS clinical research trial.
The company that called me said that all I would have to do was go to their office for a brief, non-invasive exam, answer a few online questions and then participate in a follow up survey. I wouldn’t have to take any drugs or be stabbed or anything crazy. And to thank me for my participation, I would receive a check for $115.
Of course, I signed up. I needed to help drug companies discover ways to either cure MS or find ways to make living with multiple sclerosis easier.
I needed to help others.
I needed $115 dollars.
But as the day drew closer, and I was driving to the office, I started to worry. What could they possibly want to study about me?
It had to be a scam or, at least more involved than they said.
Would they put me in a cage like a lab rat and watch me try to get out?
Would I have to run on one of those hamster wheels while they took notes?
Would they put me in a maze and offer me pellets to see if I could find my way out?
If the pellets were chocolate, I bet I could do it. If they were broccoli pellets, forget it!
These worries lead to thoughts about how important rodents actually are in my life.
Growing up, I had a pet guinea pig that I loved. Sometimes. Until I got bored with him.
My parents wouldn’t go for a dog and we weren’t a cat family, so desktop pets were the only option; goldfish, a hamster my sister named Tickles, and the guinea pig. I got to name him.
Being an imaginative and original child, I named him Guinea.
Ahh, poor Guinea. He led a short, boring life in my basement-my mom being terrified he would get loose in the house if he lived in my room.
And Tickles, little did I know how huge Tickles’ kind would be later in my life.
My current multiple sclerosis medication is made with Tickles’ Chinese friends ovary cells. Except, I think Tickles was a boy. Do boy hamsters have ovary cells?
It didn’t matter I realized, as this medication is a shot and I was done with shots! At my next neurologist appointment, my doc and I would pick a new, non shot drug to help me fight my MS.
Until then, off to be a lab experiment I went. And they weren’t kidding, this was easy money. I mean, an easy way to give back to other MS’ers like myself!
I didn’t have to take anything off for the exam or even get my arm squeezed to a pulp by the blood pressure cuff. And the survey was easy. The only stressful part was all the paperwork I had to do.
They left me in an office alone while I filled it out. And they gave me chocolates from the big candy bowl they had at the reception desk.
Hmmm, were they watching me while I filled out the paperwork and munched on Hershey’s kisses? Was that the experiment?
The next week I completed the follow up survey, (which was about walking issues by the way,) and stopped feeling like a lab rat.
Until I got to my neuro appointment later that day.
“We could try oral med #1. The main side effects reported with that are extreme GI discomfort (ie, diarrhea) and flushing (ie, hot flashes.) Not everyone gets them though so we could try it and see how you do.”
“We could try oral med #2. The main side effect reported with this one is alopecia, (ie, thinning hair.) Not everyone gets that though so we could try it and see how you do.”
“We could try oral med #3. Oh no, wait, you tried that with your last doctor and it turned out they discovered a weird untreatable heart condition that is not dangerous unless you take oral med #3. Previous trials and data show that your heart could stop. We definitely don’t want you to try that.”
Suddenly I felt like a lab rat again. Trial after trial seems to be the way of multiple sclerosis.
It was at that moment that loving memories of Guinea and Tickles came back to me.
My current medication works, has side effects that I am used to and is helping me to be strong in the throes of multiple sclerosis.
Yes, I STILL hate shots. But maybe a drug that is made from rodent cells is better than being tested like a rodent.
Apparently, Chinese hamsters are made of good stuff that can help us humans fight disease.
I made the decision to stay with my current drug. I felt confident that it was the right decision and would continue to save the day when it came to my MS progression.
That thought reminded me of another rodent. One who was super strong and super brave and ready to fight the bad guy, even if the bad guy was a disease.
“Here I come to save the day! That means that Mighty Mouse is on the way!” Philip Scheib/Marshall Barer
Does anyone happen to know if Mighty Mouse was Chinese?
Note- no rodents of any kind were harmed in the writing of this blog post.
Fun Book News–
Check in next week friends for the last contest before the release of MS Madness! A “Giggle More, Cry Less” Story of Multiple Scler
Did you get the check?
Actually, no. BUT, this all happened this week and I am supposed to get it next week. Trust me, if I don’t, there will DEFINITELY be a blog about that!
Luv, luv, luv your blog! My husband & I are on oral med #1…with the GI side effects & flushing. We are half way through our 3rd bottle & doing great. The side effects have gotten less intense & sometines non-existent. We love it, especially compared to the 3 injections we have tried in the past!
The vain me was willing to try that one over the one that could cause thinning hair. I’ve heard so many different things about it though and in the end decided to stay with pain rather than ickiness(GI problems.) So, so glad it is working for you though friend!
The real experiment was those plaid pants your mother made you wear and who decides that using hamster ovary in medication might be a good idea? I’m so excited for the book and love the blog. Happy to hear the medication is working regardless of the ingredients.
Right! The 70’s were a killer in the fashion department! Thank you friend- soon you will have the book in your hands!
LOVE it !!!!!
Thank you friend!
Good stuff!
Accepting payment could put you in trouble with the NCAA.
Don’t spend it all in one place!
The first thing I am buying with my big check is more chocolate kisses!
I did a trial for Hep C years back. It required evaluating a home test that for the virus. It took about a hour to complete (including reading the instructions). I don’t know if the kit ever made it to market. I went back a couple of days later and the check wasn’t cut, so I went again a couple of weeks later for my $15 and I was told that the trial ended and I was suppose to have returned in 1 week, not in a couple of days or a couple of weeks, to pick up my money. There was no money for me. I felt ripped off and was really angry. I thought I needed that $15. In thinking about it, I don’t know why they needed people with Hep C to participate. Maybe, the clinic never paid anyone because we, with Hep C, have such bad brain fog that they knew we would confuse the time lines for returning to pick up the money!!!! So, my message is for you to return to trial office within the time frame set, and not a day later for your money!!! Your writing is so right on, Yvonne. God bless the little animals that are sacrificed. Be well today, Janis
Crazy story Janis. Was it a big, fancy pharmaceutical company? So wrong! Thank you for sharing and thank you for your awesome support!