Or at least it FEELS that way much of the time...standing alone.
As the holiday weekend draws to a close, Tuesday rapidly approaches. Here in the Northwest, kids will be returning to school tomorrow and businesses will reopen to their customers. The sun will rise again (somewhere!) as will I...and I will resume my usual weekly activities of work, rest, dealing with Multiple Sclerosis, fighting insurance battles, preparing for the tent once again for the MS150 Ride, and an assortment of other "life" duties that happen here in CHEESEWORLD.
There is no Mr. or Mrs. CHEESE to help out with household chores, to earn a living, to pay insurance premiums, to feed the cat, to mow the lawn, to buy groceries, or to scrub the toilet bowl. Only me...the Lone CHEESE.
There is no adult child or extended family nearby to drive me to appointments, to place a washcloth on my forehead when I feel ill, to bring in my mail, to wash my windows or vacuum my carpets, to prepare my meals or wash my dishes, to do my laundry. Only me...the Lone CHEESE.
There is no team of lawyers standing by, no insurance advocate, no "big guns" from a SOCIETY organization who shall remain nameless, no pharmaceutical drug program, and no investigative journalist to hand over my TYSABRI billing fight to. Only me...the Lone CHEESE.
Yes, sometimes...a LOT of the time...it feels like THIS CHEESE stands alone. That is why this blog has become such an important "tool" in my life. I read your comments and private emails (as well as swing by YOUR blogs for a cup of tea and a read) and the many well-wishes you graciously send my way. I feel a bond of sorts with each of you as we share our struggles with MS and plain ol' living in general.
I have followed Lisa of Brass & Ivory around the Blogosphere (yes, Lisa...even to HgStern!) as she has been working behind (and in front) of the scenes to solve the mystery of the high cost of Tysabri infusions. I have laughed AND wept til near hysteria reading BLINDBEARD as she lays life on the line in a twist of humor and brazen directness. I have read with anticipation the Fingolimod trials of Jeri as she (in only a way that SHE can!) walks us all through neurotic tales of FTY720, exposing us ALL to what each of us thinks at times, but are too chicken to say out loud! I have read the beautiful prose of Merelyme as she tells the secrets of the heart in a life with MS and depression. I have straightened my stance and held my head higher witnessing the many accomplishments of Shauna as she inspires me to remember what I CAN do versus what I can NOT. I have been comforted by the wisdom of Anne and her medical expertise (since I only PLAY a doctor on the Internet and she really IS a Physician's Assistant!) as well as her, "been there, done that" experience. I have been mesmerized and brought to my knees by the beautiful creations of both BUBBIE and Michelle -- artists still creating wonderful works even WITH MS gnawing at their hands and eyes. I have been entertained as if talking over the fence with a neighbor by Joan , who has a knack for taking the simple things in life and weaving them into heartfelt tales. I have watched with joy as Zee sorts out her place in the physical and financial world...keeping me laughing through pictures and tales (tails) of Rennie and faceless/nameless friends. And I must admit, I cheer every time Tricia provides reading that is far better than WATCHING the television show, "The Office"...well, and the fact she occasionally swears in her typing, too. :-) And when I need a break from all the Multiple Sclerosis talk, I turn to Penny Ann , who has an uncanny ability to make even BREAST CANCER funny...or at least HER fund raising events for that cause anyway (And stop stealing OUR MS donors, you PiNK Pigs! LMAO).
There are a HOST of other MS blogs and other blog reads (see the links at the side bar to name a few) I peruse on a regular basis and I feel somewhat guilty leaving them out up above (like Kim and Chris and Jaime and Pb and Shawna and Mdmhvonpa --what IS his real name anyway?!?). There are just too many of you to name here and there is nothing deliberate about me not mentioning your blog...I'm just too tired to continue to cut and paste links! Which brings me back to the post title...
Yes, sometimes...MOST of the time in world outside my door...this CHEESE does stand alone. But I am comforted in knowing EACH OF YOU are only a keystroke away if I choose to step outside of THIS world and enter my "other" virtual world. Inside this computer screen, we ALL stand together...
15 comments:
The wonderful result of blogging is a "support group" on line that doesn't require getting out of my pajamas and driving somewhere on a stormy evening.
Cool, eh?
S.
Hey Shauna, how'd you know I was still in my pajamas?
Ms. Cheese, together yet alone we stand strong. Tall in humor, heavy in support, thick in irreverence, gentle in beauty, light in humor, and only a click away.
BTW, I certainly DO want to know more about the Tysabri sagas and HgStern is a good guy. Although I have to admit that his blog colleague, Bob, drives me crazy with his viewpoints on healthcare and the insurance industry.
So, hey, I'll volunteer to be that investigative journalist for ya. It may be a long project, but I'm very interested now.
See what cha went and did? You got somebody ready to go to bat. Dangerous Cheese you are. LOL.
When I started blogging I had no clue about the network of friends it would build.
I love reading the comments my posts get and really look forward, especially, to visits from the Cheese. You write the way I only aspire to write.
Perhaps I'm too neurotic to really hone a style...or my neuroses dictate the only style I can have.
At any rate, if someone were to take away my computer, it would be like unplugging my life support. It's my only connection to the outside world. (Unless you count stepping out into the back yard, but I don't because it's still within my bubble).
I'm here for you, Linda...just make sure you stay here for me too, k?
Nice legs! And thanks for your nice comments about my over the fence blog.
There are so many things I must do alone, but I can only do them knowing that I can talk to you about it later.
I guess we are The Bloggers in the Dell. I just read all the words to the song and in one version the child takes the nurse, then the nurse has a cow. Oops, I mean the nurse takes a cow.
Braincheese---
You are really humorous, but I know that sometimes it's easier to laugh than cry. I'm sending you a virtual hug and a little "Box of Rain" to see you through.
Jen
Cheese,
I recently found your blog, and have been coming for the laughs and the info. Thanks for putting it out there. I was diagnoised three years ago, still trying to make some sense of it. Not to shamelessly promote, but I have recently started an MS blog as well. You can find it at http://goodbadandms.blogspot.com/
Anyway, keep writting. I'll keep reading. Maybe we can get through this together. Even if it is cyberly.
Cheers
Bald Ben
Linda D in Seattle: aka BrainCheese
You are one of the highlights of my day. Because of you, I no longer view my blogs alphabetically and because of you, I am bogged down in blogs (aka 100+ list).
You may think you are alone there in your apartment, but you are not.
We all look forward to posting and commenting and blog talk, etc. and you are high on that list.
All that said, I am leaving on vacation on 9/13 and I am sure I will go through a blog withdrawal. I am hopeful to get the hang of my new digital camera so I can post some pictures from my travels.
Remember, you are not alone.
Anne
I too send virtual hugs. You are one strong cookie. You manage it alone even when it's hard and you do so with grace and humor. You are one of my favorite bloggers and if you were here, I would give you a ride, a hug and a free yoga class.
This is my first night perusing the blogosphere since I'm due to start Tysabri tomorrow. After 10 years of Avonex I'm through with the fever, flu, depression, and weekly sticks and my MRI shows new enhancing lesions.
Love the Cheese metaphor. I'm from Wisconsin and a Green Bay Packer's cheesehead.
I've learned more from the blogs than my MS doctor. Most Tysabri users seem to love it, unless those that don't just don't post.
One question: What pre-meds do you all take? My MS center recommended Claritin and 2 extra-strength Tylenol 2 hours before every infusion. They also draw a CBC and liver function tests before each dose.
Cheers...I mean Cheese
Thanks for the link, kid.
Hope your world settles down a bit.
I know I have been MIA for a long while but never thought YOU would have forgotten about me!
Only kidding
Sharon
I know I have been MIA for a long while but never thought YOU would have forgotten about me!
Only kidding
Sharon
One is the loneliest number, isn't it? Wait...I think I feel inspired to write a song about that! OH yeah, been written over and over, like Crimson and Clover.
I seem to be in the minority here BC, because I ain't go no desire to hug ya, but I wouldn't mind working beside ya. Two SPAZ worker bees could conquer the world!
Oh...I feel another song coming on..."We are the World, we are the children..." hum.. Could it be that Michael J's song came in my head because MS abuses us like MJ abuses his waifs? Oh yeah, I know.. Different abuse but both are unwanted and unWelcomed!
Keep on kicking!
Hi I just wanted to say hi. My name is Jen, I was diagnosed with ms last year in October. I read your Tysabri cost blog through Lisa. I hope things have gotten better for you with that whole situation. Anyway you can put me on your list of ms blogs if you want. The url is http://jensmsblog.blogspot.com/.
Thanks for the insight on your situation with Tysabri. Good Luck.
I was writing about loneliness myself a few posts back and then came to read you and blammo, we must be psychically connected through Dionne Warwick.
I spent the last few days of last week trying to find Tysabri answers about anything, making a million calls, and getting nowhere. All this on top of the first days of school.
Best,
Weebs
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