Wednesday, March 29, 2006

2000 Milligrams of Solumedrol

I have another thouseand to go.
Three days, an I.V. drip,
dripping steroids- the eye muscles
twitch with anticipation.

Yesterday, the needle
It isn't a needle dear, it's a catheter
Yesterday, the catheter felt wrong wrong.
I said, Harriet
I'm Madeline dear
I said 'Madeline, my arm hurts, aches' so she slowed the drip down.
You're such a slow drip, a dragger
Why can't you handle you're sauce

I apologized, closed my eyes. The friend who drove me,
she wanted to play rummy, she said she was bored.
I hate rummy so I told Madeline to speed the drip up again.

Today it was a little easier.
Madeline pierced me
I'm Harriet dear, Madeline has the day off
Harriet pierced me at the elbow, my hand
bruised over the night so she couldn't go there
How's the copper taste, would you like some candy?
Harriet had chocolates in her pocket to counter
that metallic steroid taste, like sucking on a penny.
There was no ache, no fear this time,
and I think I like Harriet better
but I am still blind despite it.

...the last thousand milligrams were the hardest.
They had to poke me three times, Harriet and Madeline
together, searching for a vein with access.
The doctor came in, said Don't be nervous,
it usually takes a week to kick in. Ofcourse,
it might not come back at all.
Your vision I mean
I told her she wasn't funny
But I am serious
I know, I know, I reply- but me,
I am only twenty-four, and that's young.
Certainly too young for this to be my permanant reality
and I refuse to believe it.


Anonymous said...

Wow, I just found this while searching for possible side effects the doc's forgot to tell me about (sucking pennies type thing) with this IV solumedrol. my vision is about gone now and that just makes me feel so tiny. your words are so perfect a description for this experience, thanks for sharing this with me, i feel just a little less tiny.

molly said...

thank you for sharing your experience as well.... this is the reason i blog, right here, where we connect and find a little light in all the darkness

Anonymous said...

Did it work for you? Can you see like before? I am still waiting to find out if it comes back. I am afraid I am going to lose my job. I lost the left eye 4 years ago, thought the right one was safe, never had a problem until last tuesday. thought i was lucky, in that way. I hope you are fine and seeing well. This is funny: I just bought an awesome camera--haha! gotta love the irony in the infusion ward.

molly said...

myvision did return almost entirely, with just a little loss in my colors and bluriness when i get too hot...but i always respond well to solumedrol, and i have had vision loss four times already...i think it is also dependant on why the vision loss occured. i have that what led to your loss as well, or do you experience somthing else?

Janet said...

I have had recurrent optic neuritis for 16 years (always on the left, about 7 episodes), an episode four years ago did not respond to solumderol and the left eye never recovered. This is the first time I've had it in the right eye. I hope it recovers soon.
I have never shown lesions on brain or spine MRIs, only bad VEPs and now a bad OCT. So, no MS, just an "eye problem" that requires a crazy treatment that no one I know can understand. I have never met anyone who has had this and have often wondered if my experiences were par for the course or if I am just a big sissy. I don't know what all of the side effects are with solumedrol, but I find that I have crazy mood swings(I don't get the 'roid rage', just really sad and then I have to shop obsessively, this time i ordered a mobile art sculpture), purple arms (embarrassing long sleeves in warm weather) tremors, nausea, a little hair loss, and of course, I look like a marshmallow! I do 5 days IV then taper for 6, and I am day 4 of the taper, so I should expect to regain my mental faculties any minute now...haha
This is funny: last night my husband and I went to Lowe's and bought 3 more lamps and a track light set so I can light up the room enough that it may be visible from the spacestation and to me as well!

molly said...

hi janet,
i want you to know i have every intetntion of continuing this conversation but i am very busy with work. i write this just in case you stop back- i have things to say in response, but not the time to think it through until tuesday.

you are in my thoughts and i hope sight fades back in before we "talk" again

molly said...

good morning janet,
i think everyone has their own side effects to solumedrol. the mood swings are par, i like to say i am just a nut for two-five weeks after a treatment (i dont do the taper, i just go cold turkey)every time i have solumedrol. i alkso want to eat more. as for the shopping issue, i dont know if tyhats a side effect or a way to bring yourself some sort of comfort and reward for making it through the expereince, but it doesnt matter what i think. always believe yourself, you know best what is happening in your own body. i say this because my skin feels like its burning after i get a treatment. my neurologists have all told me that it must be in my head, because it is not a normal side effect, but they are not in this skin with me. the burn never fails to happen once i hit the 3 gram point (the most i have had in a treatment was 4.5 grams over three days), it starts in the shoulders and spreads, the skin is very sensitive and kind of feels like a sunburn.

i call the burn my healing, i embrace it, and use visualization to imagine my body healing...seeing the burn as a sign the inflamation is going down. i believe that if i allowed the doctors opinion to be stronger then my own, my healing process would be slower and less successful.

i assume since they are giving you steroids, your optic neuritis also is an inflamation, so i suggest you use visualization as well to aide your healing, think about the steroids soothing your optic nerve, your whihte blood cells trying to repair any damage,give all the side effects a purpose, believe it is your body fighting for your best interest.

and please, keep me informed on how it is going

Janet said...

Your words are very reassuring, and I agree with you about knowing my own body's reaction, some of my perceived side effects seem so bizarre, the first time I had a solumedrol treatment I thought I might be having an allergic reaction because I felt so strange. Now I know better what to expect, but it still feels bad for awhile. I am back at work, thankfully, and so far it is going well. (fake it til ya make it, right?) I haven't broken any of the glass objects or injured myself on the metal sculpture yet, so that's awesome! I did get quite a fright today when, through my bleary vision, I swear I saw the egyptian god annubis six feet tall and walking down the sidewalk, it is afterall, halloween! haha! It was the bartender from the bar on the corner l later learned! Gotta love optic neuritis on costume day!

The PA at my doctor's office says it can take up to 3 weeks to show improvement and I am perfectly set for that or as long as it takes, I have a car, but I live downtown within 2 blocks of the gallery and 3 blocks to the supermarket and everything else. So in that way, we are very lucky. (well, because we planned for this just in case). I don't know how other people deal with the effects of this situation, but the hardest part for me has always been the physical stress of the steriods, and that part is over now and my happy attitude is back and I am starting to look less marshmallow-like everyday. Oh, and this is funny: I am still shopping, so maybe that's not so much a thing I do with solumedrol, I just had waaaay too much time at home with the computer last week! haha! I just ordered the prettiest little silk jacket from Sacred Threads....hope I still think it's pretty when I can see it clearly! haha

molly said...

so glad to hear youre back at work and struggling for health

i really appreciate the sense of humor you bring to your experience. i also try and approach my difficulties with humor, as everything in life is worth some sort of laugh if you focus on the humanity of the situation.

once again thank you for coming around, my gratitude for this conversation and di hope you keep visiting from time to time

Janet said...

It has occurred to me that stem cell research may provide an answer to some of the problems we face, and for sure my brother who has diabetes. I know the face of our government may change as of this Tuesday (got my fingers crossed) and perhaps priorities will change. I understand that it is a hard idea for some people to accept, with the whole preservation of life arguement, but federal funding for something that can help so many people seems like a "no-brainer" and this preservation of life arguement falls flat when I remember that we are spending 100 billion federal dollars a year ruining lives in Iraq.

As for me, I think my vision is improving. I may even try the car again as soon as next weekend. I have been able to work on my jewelry designs today, which is great because this is the busy season.

Hope you are well and stay that way

molly said...

good morning janet,
i have been a bad little blogger, but i hope you check back every now and then and will read this and let me know how you are doing...i would love to see pictures of your work sometime, both that domne with full sight, or stuff done in the different view of blindness (like my poem)...i imagine both are very interesting

Anonymous said...

Wow..its so ironic. i went throught the same things as far as the vision, the steroid, the time it occured and the age. Its lyke ur telling my story. I can relate 1000% to this poem. Im so sad that I didnt discover this when I was going through it. I believe that It woul,ve lifted my spirts at the time. Just to know that I have a person the same age as I going through the same trials...Im glad that a read this...even though its years later

molly said...

thank you starr, for letting me know your reaction.... this is actually one of my most read posts, though rarely do people reply to it, but my hope always is that it gives some comfort to people who might be going through some hard stuff...again thanks for stopping by, and thanks for the comment

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