Caren from NYC posted on her creation: Our MS Stories.com
This link does not seem to work anymore.
I hope Caren is OK. I wrote her a couple years ago and she did not write back.
It got me started blogging.
Here is my story.
By Mary Gerdt
all rights reserved
This is my story and I don’t know if it will knock you off your feet or just make you say to yourself, “Ho Hum, what a boring article. I think I’ll turn on the 24 hour cable news or Golf Channel.”
This thought came to me sometime in this first year after I was diagnosed with MS at age 49.
How and Why am I able to take these shots every day?
It was weird.
I am a nurse who always explained the rationale for a medication, explained how to administer, and worried about “compliance” now AKA “adherence” to a medical prescription. We can tell people what is prescribed and why but I do know “Blah Blah Blah” might be all they can hear after they hear “You have MS” or “You have cancer”.
We also know people sometimes take twice as much or half as much as ordered or put it in the wrong orifice or drop it or lose it or they have a reaction and there it sits, gathering dust and you thought you did such a good job explaining what they need and why. Or they can’t afford it and use half or less or listen to the neighbor and give up on the whole mess and buy something off the internet or from the health food aisle at the grocery store.
I am on study medications which makes it even weirder since I may be shooting in salt water and yet still hoping what I am doing helps the people coming after me and keeps those being diagnosed from having to experiment on themselves.
It is really a different feeling being told (rather than telling someone) you need to do such and such to prevent something from happening or getting worse. I have to get that out early on since that is a major distinction. Before this year, I felt the “luxury” of not having to stick myself but telling someone else to stick their self. I also learned to dread needing a needle, daily meds, a regimen of medications. I dreaded it so much, that was all I could think about after diagnosis.
Can I really do a self injection?
Will I remember the shots?
Will they hurt and I will just give up on them?
Will they really help or give me some other dreaded disease?
What will I do to remember the shots? My routine?
How will I afford them?
What if I don’t have insurance?
A backup plan for my shots?
This loop of questions kept playing over and over for the month I had to wait to decide on treatment. Plenty of time to dread the meds, grateful for the month off so to speak, wondering how life would change after the shots. How would I vacation? How would I deal with dirty needles? Can I do my own shots? I hate shots. Then, again, how will I remember?
Neurology was one of my specialties. I couldn’t get enough of it. Between working on the neuro floor then ICU and now long term care, I have seen my share of neurology “cases”. Now I was a case. About 20 years ago,
I saw a woman come in newly diagnosed (they used to be admitted to the hospital for 5 days and start IV steroids-what an awful place to curl up in bed and cry hysterically from the steroids and choke back the tears.) I saw the same woman like chapters in a book. There she was the next year. Now can’t walk. Then next year, she is falling and face fat from steroids. We teach her to in and out self catheterize to drain her bladder. Next year she is bloated in a power wheelchair and manages a half smile, head tilted. Did I show her how pitiful she looked in my face? I tried not to. Hoping I was one person who could straight talk to her, listen to her dreams which would never come true, praying for a miracle I knew was futile but could I live with myself if I didn’t try? Next year she choked a lot. Next year nursing home, more out of it. Sometime she died and I never thought about how. A staph infection? Pneumoia? An infected skin ulcer? Some freaky cancer? I don’t even remember. One day she was gone.
Another woman, a pen pal. Was older when diagnosed, maybe someone like me. Somehow she and I and her husband connected. She came in periodically like they all did. Admitted for 5-6 days and got the steroids and got poked by the new medical students. Large groups of young childish looking boys and girls coming at you with their tools to test your reflexes, look deep into your eyeball and ask you questions about urinating and sex. How did the patients keep a straight face? Sometimes they would joke around and that made it all lighter. All I know is every time she came in she lost a little function, a little light to her eyes. As if she was being worn down, eroded, dimmed. Her husband would joke a little more, seeing the look on my face when I saw she had lost ground.
“I’m OK” she would say to reassure me. Why did she need to reassure me? Now I see it in the faces I tell, “I’m OK.”
There have been many. Too many to count. Too many to explain to you that I really do know a lot about MS by all these people I have encountered in my nursing experience. Just trust me. I will not presume to know how any of them felt, mind you. But I can tell you how I felt seeing them, come back year after year. Chipping away at my hope they could improve or stand still where they were. Hoping only that I could improve what life they had left. Hoping I could distract them from the misery they felt smother them. The dependency that grated their sense of self. The cognitive changes I fear the most. Loss of control. Loss of sense. Loss of mind. Loss of self. So many losses.
One woman’s husband found refuge in another woman’s arms while his wife who had MS was finally forced to be in a nursing home for complete care. This caused a stir of course. The self righteous and simple minded felt it was cheating, adultery, even abusive. The people like myself saw how it could happen. And I believe it happened somewhere between when the Sufferer of MS was with it …
and when she wasn’t.
I wondered if our resident (as nursing home clients are called) even knew her husband was stepping out. And if she did, her anger was diluted by spasms, far away looks, incontinence of bowel and bladder and occasional moments of angry looks. Kind of like how toddlers look when mad. They have a hard time holding that thought, any thought. She could scrunch up her face and you could do kind of a dance or wave her stuffed animal and she would stop, even smile. No mood lasted. Her cogs were chipped as I like to say.
To me Cognition is how our gears turn in our nervous system. One thing leads to another (sequencing). We learn sequences by trial and error and from watching others. Some instinct I want to think. Some reflexes.
To me, cogs mesh with other cogs to keep the machine moving in the proper sequence.
When the cogs are chipped or broken, the machine doesn’t work the way it should. It skips, or stops altogether. Or goes backward. Or spins wildly out of control.
The neurological system is made of billions and trillions of cogs.
And likely just as many ways to break down.
So when I was offered wheelchair repellant as I am calling it now, it really was in the spirit of keeping the cogs turning. Keeping away from going down the road of all those people I knew who had no such opportunity.
I said to myself, “What would Mrs X do?” X stood for all the people with MS I had encountered and would encounter. It was a way of grouping everyone into one category without explaining each individual scenario. They all had MS in common. Some mild. Some way bad. Some young. Some old. Some men. Some women. Straight, gay, tall, short.
They all carried what I now know I carry.
They mostly all would have taken the chance.
“We have a new way to treat the monster disease that has robbed you of normalcy. Are you interested?”
How many could have said no?
“It involves taking 8 shots a week.”
OK I lost a few.
Some are placebo or maybe not.
Lost a few more.
Now what if you don’t really think it’s going to get bad or worse or you don’t know or don’t care or can’t read or your husband just left or you just had a baby or are pregnant, or your best friend says try the herbal crap at the drugstore.
Now they are leaving in droves.
Stop…Stop I say.
Don’t you know you are going to get worse? Or bad?
You are handing them a chance at the normalcy they left long ago.
Why don’t they want it?
Which is why I started to write this anyway.
To tell others that the alternative (no meds) was bad. Way bad. That if all those who suffered before you took these meds available now, that they would be happier (not happy), and less disabled (not Not disabled), and less afraid.
Going down the road and feeling more in control (but not in control).
To tell others that the shots are NOT something to dread and awfulize.
They are NOT awful.
To tell others that when I get the flu symptoms and have to lay down that when I wake up I think I am still buying strength, delaying the moment when I stare from a bed and have that strange half smile and a wet bed. Maybe even make an unintelligible sound like infants do. Maybe look at my loved ones and react or not. The connections, the cogs, failing to meet and finally failing all over until a kindly death.
There is a reason I stay on course.
Why when I forget my husband remembers and working together I stay on the medications.
Why I gave up the self injector and just go free style with my shots and now it is not a bother at all.
Ok, I get pains and some hurt more than others. Sometimes they bleed more, sting more. Once early on I dropped a needle and it landed “clean”. I picked it up and made Fred shoot me with it. Never before would I have thought I could have picked up a needle off the floor and shot it in myself or anyone. No spare needles at home like there was at work. I got some spares now and haven’t dropped a needle since.
I sometimes marvel that if I found needles as easy to shoot with as they are now, I might have been addicted to heroin. Scary thought.
Fred does my IM shots in my arms and Gluteus Maximus. He is more bothered but it really doesn’t bother me. I am still training him and picky about shots like my old nursing instructor.
Nothing personal, mind you, I am just trying to help him do it right.
Major complaint: A paucity of decent information of how to do it right.
Remedy: Working on writing things like this paper.
Major complaint: Propaganda BS from the drug companies that cite these studies and then someone says, “which drug do you prefer?”
Reality: One makes you sting like a bee sting everyday, one makes you sick with the flu once a week, one is like the flu every other day but not so bad? One taken off the market when somebody died or got sick or….
So many choices. It makes you want to say, “What if I don’t do anything?”
That’s what I meant about writing this article.
Your best bet is to do something.
I saw myself what happens when you do nothing.
At least the studies on the poor people at first verified
You Must Do Something.
That is why they stopped the placebo only studies vs. some drug.
The people on placebo did badly.
They did worse, just as I described when you do nothing.
So I want to advise anyone who will listen to do something.
Start with hooking up with a competent neurologist who specializes in MS. I don’t mean dabbles or has seen a few people with or did a rotation in Neuro in med school. Doesn’t count.
I mean a person who runs an MS clinic. Who is an advisor for MS policy and research, who is connected to the with it/ in the know neurologists of the present day.
I mean a person who you can talk with and they care about listening to you and your complaints and questions, ordering the right meds and when you are overwhelmed and things are going too fast, they can put their hand on your shoulder and slow it all down and say, “We will take care of you. Don’t worry.”
And when you come back after hearing the bad news and you are stunned and sitting on tissue paper on the Dr. table and she looks at you face and she decides not to start right in on protocols and the routine exam, but says, “Have you had a good cry yet?” And you choke a little and say, “Yes” and you remember when and where and how hard the tears came out and you don’t even know, so early on that that was just the beginning of letting it all out.
She gave me permission to have an even bigger cry later that week. She said it was good for me.
Stevie Ray Vaughn said in his song,
“Every tear that I cried, only washed away the fears inside.”
My fear of shots faded after starting on them.
The inconvenience of clinic appointments and MRI’s and blood draws and keeping track of my meds and side effects are really pretty minimal.
Is that because I know the alternatives so well?
How can I relay this to others?
That is why I wanted to write this accounting of my perspective because so few people will have this viewpoint. Few people will have more
than 25 years experience like I do with MS patients/clients/residents/People and
Doctors and Insurance companies, Medicare, Medicaid and shots and personal care.
Today I found a website to post this on and share with whoever will listen.
Best wishes to you and yours. Mary Gerdt diagnosed August 2007.