Image by theG™ via Flickr
Hey folks, I'm finally feeling well enough to make a post, although I think it'll be a quick one, since my stamina still leaves much to be desired. Three weeks after being hit with this somewhat mysterious illness, I'm still running a low-grade fever, and my energy levels are quite low.
First and foremost, I'd like to deeply thank all of the wonderful people who have sent healing messages and well wishes via e-mail or comments on this blog. Although I'm not usually at a loss for words, I truly cannot express how deeply your expressions of concern are appreciated. When I started this blog a little over a year and a half ago, I never in my wildest dreams imagined it would attain the popularity that it has, and I'd like to thank each and every reader for your input and support through good times and bad. Although I have not been able to spend any time on the computer, I have been able to read e-mails on my phone, so your messages have gotten through, each one a drop of sunshine in an otherwise miserable experience. Unfortunately, I've not been able to respond to these e-mails because I rely on voice recognition software to "write" my responses, but as soon as I'm feeling up to it I plan on answering each e-mail individually. Please be patient, though, as my reduced energy levels and the sheer volume of e-mails that need responses will make this a slow process.
In a nutshell, three weeks ago today I was hit with a fever of unknown origin. Though both my blood and spinal fluid have been cultured for infections, none has shown up. Despite this, my illness has seemed to respond favorably to antibiotics, which further deepens the questions surrounding it.
I spent five days in the hospital, and yes, much like my last visit to the hospital in July, I did again have a very colorful roommate, who I'll write about in a future post. While in the hospital, my fever spiked to 102°, which is quite high given that my normal body temperature is about 97.2°. Needless to say this was scary, but large doses of ibuprofen managed to get the fever under control. As all of you with MS are aware, fever sends MS symptoms into overdrive, making such episodes all the more frightening. Worse yet, the nursing care at the hospital was in a word deplorable, as the ward I was in was understaffed, and the staff that was in place was simply overwhelmed by the volume of patients they needed to attend to. Still, the constant struggle trying to get nursing attention for both my roommate and I did nothing to alleviate my intense discomfort, and was frankly enraging.
All the more frustrating is the fact that the hospital I was in, Roosevelt Hospital in Manhattan, has a "VIP" floor (click here for details) on which patients have beautifully appointed rooms, individualized nursing care, gourmet meals, extra accommodations for family to stay with them, and even afternoon tea service. Naturally, all this comes at a steep price, starting at $400 per night for a "standard" room, above and beyond the regular exorbitant hospital fees. Of course, no insurance plan will cover such expenses, so these elite services are the province of the very rich, of whom there are plenty in NYC, who can afford to pay such prices out-of-pocket. Since my pain management doctor has his offices on the opposite end of that same floor, I've seen some of these facilities firsthand, including the beautiful dark hardwood floors (as opposed to the institutional tiles in the rest of the hospital) and the uniformed concierge ever vigilant at his desk. Yes, here in New York City, often called the capital of the world, the very rich get extraordinary care in the same hospital in which regular folks can't get a god-damned nurse or nurse's aide to give them their medication on time or to help out a roommate who is violently throwing up. So much for the myth of a just society…
Okay, that's it for now. Before I blow a gasket, it's back to bed for me. I promise to fill in the details in the coming days, not all of which are quite so dreary. Even in the most troublesome days there are reasons to laugh, and concentrating on just taking it one day at a time, along with the constant acknowledgment that we are all just bit players in a huge theater of the absurd, goes a long way in making things bearable. As Nietzsche said, that which does not kill us makes us stronger, but as a friend of mine responded, that which does not kill us can make us pretty damn sick.
My deep thanks again to all of you who have reached out in support, and a special shout out to my wife Karen, my mom, and the rest of my family, who have gone above and beyond the call of duty in caring for an ailing kamikaze…
So glad to hear your are getting better. Keep resting and continue to get well.
i would vote for no responses at all to the people that wrote to you (including me). just keep your blog up with new and interesting posts.
so glad to see you back.
Welcome back! No need to respond, just really happy to have you back. Yes, a huge thank you to Karen and your family.ReplyDelete
I am really disgusted by the health care system in this country. It just depresses me. I'm very liberal, but at the same time I appreciate how capitalism should allow for the type of high luxury hospital floors you talked about (I wish I could afford it!), but only when everyone else is taken care of.ReplyDelete
Glad you're back.
You definitely seem more like "you", Marc. :) Keep resting and continuing on that road to full Kamikaze recovery! :)ReplyDelete
Take your time please responding to your well wishers who I am sure would rather that you expend your energies on getting well. You know now I hope how much you are liked and valued. Take care,ReplyDelete
So glad you're on the mend. Take good care and fill us in when you're up to it. Get lots of rest--we will wait patiently for you.ReplyDelete
Healing energy your way...
Good to have you back.ReplyDelete
Welcome back, Marc. While Karen did a fine job of keeping us apprised of your situation when you down for the count, it's nice to read you in your own voice again. Mend away. I eagerly await the tales of your hospital experience.ReplyDelete
Hi Marc, So happy that you're on the mend, it certainly has been a rough patch for you. Don't try to do too much, just take it easy and we'll look forward to hearing from you soon.ReplyDelete
Cheers Judi (Australia)
Marc, I am so glad you and your voice is back again. Karen was great but this is not her blog, she did what she had too and I was waiting for you.ReplyDelete
Your blog on hospitals has brought out the democrat in me. I once went to a poor city hospital as my fertility doctor directed me there for simple pre-surgery tests. OMG! I felt treated as a "welfare" patient with no worth. Later the simple surgery was done at his private clinic Nurse Mary, took such care of me, offering warm blankets, drinks and snacks. I wanted to live there.
DS as a toddler fell against the coffee table and cut his head open at my sister's one Thanksgiving. We rushed him to the closest hosipital, high-end in a wealthy community. The nurse (who stayed with us whole time)was like like a waitress in an expensive restaurant, "Hi, I'm Julie, I'll be your nurse (waitress)for the evening." 6 stitches later, now he'd 18. Never a scar. Within that year I had to take his urine bag to an emergency room to get testing for suspected UTI. 2 Hours later I walked into the behind the desk room and thrust the bag at someone and left. This behavior worked.
Good to see you on the mend. Hang tuff. Plus I second the motion of not replying to all emails - preserve your energy.ReplyDelete
We just wait to journey with you, Marc.ReplyDelete
What a powerful man you are.
Hope you are finding the "Gap" and you are resting in the "arms" that reach out to you..(mine included) across the miles..indeed around the world.
Good thoughts and hugs to you and Karen!! from southern BC. (Canada)
Marc, so good to hear from you, I've thought of you each day and hoped you could feel the collective hugs from your cyber friends lifting you up. I will continue to send good thoughts and wishes your way and to Karen and your family as well, I am sure they were very concerned about you. I also vote for not responding individually, conserve your energy for getting stronger.ReplyDelete
Marc, so good to hear your "voice" once again...know that we are all still praying for you, sending healing energy and loving thoughts your way (and to all the patients in the hospital who are in need of some good energy along with more attention....and the poor nursing staff exhausted and I hope doing their very best in unreasonable conditions)ReplyDelete
rest, rest, and watch funny movies on netflix instant....my fave companion on days/weeks/months in bed.
Hi Marc, it's good to know that you are on the mend. I only recently discpovered your blog and have been reading it with great interest.ReplyDelete
All I can say is "hang in there, it always gets better after a setback of this sort."
I have been fighting MS for 18 years, so I know exactly how you feel. Best wishes to you and your wife Karen.
YEA!!!!!!!!!!!!!!!! Just YEA!!!!!!!!!!!!!!!!!!!!!!!What a spirit you have!ReplyDelete
Marc, hope you're back in full kamikaze mode soon. I have been reading your posts for a few months now and look forward to more.ReplyDelete
Glad to hear from you. Baffling symptoms and diseases..just our luck to get stuck with stuff like this. Hope you are back to 100% soonReplyDelete
And say Hi to Karen plz.
It's good to see you posting again, my friend. I have to admit that the "VIP floor" page made me throw up in my mouth a little. This Haves & Have Nots game is getting beyond ridiculous, and completely infuriating. They have a concierge, and you can't even get a nurse. Ha. Perfect.ReplyDelete
Much love to you and Karen - please thank her profusely for trying to keep us up to speed. You're a tough act to follow, after all.
Hope to see you back around KK very soon.
Marc, C'mon man we need you out of there and back on the beat! Missing your presence a lot. Thisisms and Facebook are going nuts I think. Joan aside, they are exploding and losing a lot credibility. Maybe that's a good sign. But miss you much buddy.ReplyDelete
So happy you are feeling better but the phrase "ailing kamikaze" makes my heart hurt. :(ReplyDelete
If you are up to it WRITE A LETTER!! And copy everyone under the sun. The president of the hospital, the PR department, the Medical Director, the Mayor's Office, the New York Times. I guarantee you will get a response and different treatment next time. As you know, I speak from experience. :D
Take care of yourself my friend.
Welcome back Marc;ReplyDelete
Happy you're getting better. Just take it easy and heal. We all miss the Blog, but can wait for you.
I'm so glad to hear that you're back in the land of the living, although I'm not sure that I can ever trust you again (that zombie thing). I'll be looking up just how to actually kill one before I travel to New York again. Until then, both you and Karen take of yourselves, rest up, and heal. We need you!
What a cat you are, kamikazee. Tossed out the window, you flip, flip, flip in the air and land on all fours again. So,so glad you are with us.ReplyDelete
Hope you go from "illin'" to "chillin'" soon-- best to you in your recovery!ReplyDelete
Yay!!! Marc's back!!! Ah, be well, friend. I love, love LOVE your blog.ReplyDelete
From my deep, dark, damp woods,
to your big city,
Thinkin' of you....sending healing love.ReplyDelete
Some wheelchairs, such as the Aluminum Lightweight Transport Wheelchair with Cable, come with hand brakes, making it safer to travel over bumpy terrain.ReplyDelete
Sounds like the hospital room is set in a high priced hotel. Hope you feel better soon.ReplyDelete