Friday, February 14, 2014

The Poison Miracle

It does exist.  AND I WAS AWAKE FOR NEARLY FORTY EIGHT HOURS AS LIVING PROOF.  Its name is Solumedrol and it is a steroid. 

The Miracle Part:  I have been virtually incapacitated since I got out of the hospital before Christmas.  Walking was agony. The soles of my feet have been on fire due to neuropathy.  Having anything press against them, even brush against them, was torturous.  My legs were too weak to swing up onto my bed anymore, so what little I slept was either in a recliner or sitting on the side of the bed, leaning against a pile of pillows.  Because it hurt so much to take even a few steps, I could not sew at the sewing machine.  Or get to the bathroom promptly.  I have been getting progressively shorter of breath.  Even though I am using the ventilator, I am gasping for breath with the least exertion. Getting to the kitchen to make so much as a cup of tea brought me to tears because it was just so darn hard. As a matter of fact, that is practically all I did, sit and weep in spurts as I brooded over everything and anything.  I was frantic and terrified about having metastasized cancer.  I sobbed over the children I miss so much and prayed desperately I could make things right again.  I don’t like television, and couldn’t focus anyway, so I didn’t watch it.  I couldn’t concentrate on reading.  Wondering how long I even have left, I just saw a lifetime of this humiliating  suffering ahead of me, knowing despite what some people believe, I am neither brave nor dignified.

It finally occurred to me to call the doctor and ask for some help.  Thursday I started a course of intravenous Solumedrol at approximately 3 p.m.  By 4:30 Friday morning, I had significantly less pain on walking.  I was already a little less short of breath.  My feet were not burning as much.  I did spend the night in the recliner in the sunroom (even though I didn’t sleep), but I was relatively comfortable for the first time in months.  I watched two British TV series (Broadchurch and Collision, both fantastic) and actually was able to concentrate.  I even made a cup of tea without crying.  This won’t last forever, relapses are inevitable, but steroids truly are a miracle for now.

The Poison Part: Steroids affect every part of your body, just like MS, only in different ways.  They cause weight gain and salt retention.  (Although I am the only person in existence who could develop a wasting disease and not actually waste).  It causes increased blood sugar.  A higher likelihood for infection.  Lowered immunity.   Hair loss.  Mood disorders.  Skin problems.  Increased blood pressure.  Weakened bones.  Kidney problems.  INSOMNIA.  Is that enough?  Ironically, I don’t get a common side effect that I am prone to when I am not on steroids: depression.  Perhaps it is simply relief, or maybe I am going nuttier than usual, but I am positively giddy with happiness right now.

Belated Holiday Update

Christmas was lovely, thanks to my daughter, who, despite being eight months pregnant, made it a peaceful, blessed holiday.  She decorated the house beautifully and we had a fun Christmas morning with Maddy.  The only pall over the season was the absence of my other three children.  I miss them so much sometimes I literally cannot breathe.  Just talking about them or looking at their pictures, those beautiful, precious faces that I love so much, makes me cry.  I lived for them.  Without them I often feel I have nothing left to live for.  I try to force myself to remember to focus on what I do have, my God, my daughter, the two grandchildren I know, my fifth grandchild due any minute, my friends and loved ones.  They are my blessings.  I must be grateful for them.  I am grateful for them. But I am truly bereft at what I am missing.

Computer Issues

Because I sleep so poorly and because I am on this wild cacophony of medications, I am notorious for spontaneously falling asleep.  I fall asleep talking on the phone or in person, it makes no difference, and there is usually no warning.  At least twice I have conked out on my dear friend Robin, who is a perfectly interesting and entertaining companion.  But to my humiliation and regret, I have managed to lose consciousness despite her many charms.   She has let herself out.

The worst part of this is falling asleep with a cup of something in my hand, whereupon I will wake up bathed in the substance.  This is not fun.  Thank goodness I have not had a boiling cup of tea in my hands, but I have had many a tepid one.

Not too long ago I dozed off holding a small cup of ice cream.  It melted and seeped under some of the keys on the left side of my laptop.  When I did finally wake up, the keys were sticky, but functional.  After two weeks of this I got a brilliant idea.  The ice cream didn’t hurt the laptop, but the stickiness was irritating.  So, I thought I would try a few drops of water to wash away the ice cream.  Yes, that is correct, I, the product of approximately 22 years of education, decided to wash out my laptop with actual water.   

It took me roughly 30 seconds to completely destroy it.

I tried blowing on the keys to dry them (I have a lot of hot air, as anyone who reads this blog is aware).  I tried the hair dryer.  I tried the ever popular shake-it-real-hard and its cohort, bang-on-it.  Finally I admitted defeat.  Mary Kate took it to the Geek Squad at Best Buy, but they couldn’t salvage it either.  I had to get a new lap top, although I did get a bargain and the Geeks transferred my hard drive to the new one.  But something must have traveled with the old files, as I am having tough time with the new computer.  I cannot access my e-mail, Foxfire or Facebook.  I am working on cleaning it up, but it is taking long time.  Lucky thing time is one thing I have plenty of right now.


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Muffie said...

So sorry to hear about your relapse, but happy that the roids are kicking in. Are you still getting radiation therapy? How has that helped? I think of you often, and you're definitely in my prayers.

Patty Woodland said...

I'm sorry but your children are assholes. I did not get along with my mother - in fact at times I hated her for what she put me through in my childhood but I didn't abandon her. My brothers and I took care of her 'til her last days. She was not a good mother but she was our mother.

They will regret their behavior - you can haunt them. Or come back as their next pet and be really, really bad.

I fall asleep on people too. My husband just tucks me in wherever it happens to be. He doesn't let me have food around the furniture or computer any comment.
Goat hugs from Pricilla and the crew.

Marie said...

I removed an anonymous comment that was critical of me, but primarily because it insulted others that I care about and I won't allow that.

In the interest of fairness, I will leave the remarks about me. Readers can make their own decisions about the accuracy of what was written.

The other person wrote in part "You have no idea what a sick EVIL woman Marie is!!!! That's why none of her children have anything to do with her...Marie treated her own Mother like SHIT, abandoned her when she was dying and did not attend her Funeral. What comes around go's around. "

It makes me sad that whoever this is has invested so much energy in despising me. I have no idea why they would even bother to read my blog. I will keep them in my prayers, though, because it is so unhealthy to hold onto so much hatred. It has to be exhausting. I am so sorry they choose bitterness over understanding and forgiveness.

Marie said...

Muffie: Thanks so much for your prayers and encouragement! I am done with radiation and it went much more smoothly than I expected. It was really tough getting there 35 times (!), but, with the help of about a dozen friends and the great staff, we did it! I will have a scan next week to get an update on how the tumors have progressed or reduced.

Patti: Thanks and goat hugs for being such a loyal friend. I don't want my kids to seem bad. They could make a pretty good case for me being an asshole at times, too, but I think that is the operative phrase: "at times". No one is perfect, but I certainly have not been all bad either, just like them.

We have had some rough times and all have acted badly sometimes, but on the whole I thought we loved each other and could move forward with that love. I always had fun with them and enjoyed their company. We had fun traveling together. They gave me a spectacular 50 birthday party. I just was more and more proud of the adults they were becoming, not because of me, but because of the paths they were choosing in their lives. This is such a loss for me, it is just unspeakable. I never saw it coming in a million years.

Thanks for caring so much. xoxo

Anji Knutsen said...

I'm pleased that the steroids are having a 'positive' effect. I must tell my MIL about them. She sleeps a lot too and is confused at first when I phone her up. She would understand the battle involved just to make a cup of tea.

I presume that your third grandchild has arrived by now. I hope that all is well for daughter and baby.

I can understand the temptation to get rid of the stickiness with water. Hope you remembered to unplug your laptop, you could have blown yourself up!

May the Solumedrol long continue to help


Marie said...

Anji, thank you so much for your sweet note. :)

I am so thankful, the steroids continue to keep my symptoms at bay. What a relief! I am sorry your mil suffers as well. I will keep her in my prayers.

My newest grandbaby is still living the high life in mummy's tummy! My poor daughter is at her wit's end. But she should be born in a day or two, finger's crossed!

No, I did not remember to unplug the laptop! I could very well have blown myself up. Fortunately, I haven't yet. lol And for now my computer problems seem to be resolved.

Thank you for the hugs. Sending some back to you as well. :)

Sharon Lovejoy said...


Thank you for your visit and your sweet words.

I am hoping that you are doing better, but awake that long?

I've been bad about blogging due to LIFE.

Sending regards,

Sharon Lovejoy

Marie said...

Sorry it took me so long to clear your comment Sharon! Just shows my neglect of my writing!

Thank you so much for your kind words. Yes, 48 hours of wakefulness is indeed possible on IV steroids. True, you may doze here and there, but other than that, it is amazing how long one can go on.

Thank you again for taking the time to leave your comment. I am looking forward to following your lovely blog.