My story of living with a chronic neuromuscular disease.
Monday, February 22, 2010
Going off on Facebook,,,and a tiny MG update
So, this one is a bit off topic but it has been bugging me. Well two things have been bugging me. One, I hate, hate, hate the new Facebook layout. Two, why are Farmville, MafiaWars, Flower garden and quiz updates worthy of postings on the News Feed? Addressing my first annoyance includes the fact that for whatever reason, the new layout grades what status updates are the most news worthy. There was probably some egghead who was paid $1000's of dollars to develop software to decide what status updates post first. The result is instead of finding out that a close friend decided to go back to school, or someone has the chickenpox, or a new love interest, or a fun take on a news story I didn't catch, I now know how many cows, pigs, and chicken's people have aquired on a cyber "Sim" world.
Now, I don't really care if you just absolutely have to have 100 acres of cyber farmland, or you get your rocks off by doing a drive by on your first kiss. However, in as much that I don't care if you enjoy it (I promise it won't affect our real relationship) I really don't care what you accomplished in your imaginary game state today. It is a time and space sucker for me because I now have to scroll through all the B/S. In fact, I bet if I polled all of the cybergeeks who are nearest and dearest to me, they don't really feel the need to shout from the rooftops how many petunias they were given today in their garden.
I love Facebook, I love how many people it has re-connected me to. I love how many people I now keep in weekly touch with versus bi-annual touch. However, I really loathe the application updates on my news page. Okay, that's it, I'm done, just had to get it off my chest.
So for the MG, the IVIG on Friday went effortlessly. Love my nurse still in that she is the best IV starter this side of the Alamo. However, she is not much of a talker - I obviously am. She also doesn't watch television...none! And she is extremely conservative. I am a bit, okay not much, just on my personal beliefs but never affecting those around me in an uncomfortable way. I cannot catch up on any shows without sighs and sometimes comments, that can make 5 hours go by realllly slowwwly. Did I just say 5, not 6, yes 5 hours??? Why yes I did!!! I can tolerate a smidge higher infusion rate so I am done by 2pm instead of 3pm...woo hoo...yes, it is a big deal:)
As far as my overall illness...I don't know. The last few weeks have seen some setbacks but I have things to pinpoint that on. For starters all the medical stress in the family rubbed off on me, I just care too much I guess but I will hold on to that with all I've got. It has always defined me and MG can't take my empathy away. My empathy can make the MG worse but it isn't like my bi-cep where the disease can just target it and take it out of commission. I have been much better mentally now that my loved ones are out of the hospital, not on the verge of a heart attack, and not facing cancer (different people...I know...confusing). However, my little 3 year old petri dish brought home a nasty bug and that has set me back once again. I just started my Z-Pack, praise God for good doctors, so I hope I can kick it to the curb quickly.
I see Dr. Teener, my neuro at U of M, next week and I am excited to see what he has to say. I am going to review my blog to put together a picture for him of how I have been doing. I don't think I am at the point to reduce the frequency of treatment but I am optimistic in the fact that I stayed out of the hospital for two weeks straight...knock on wood. I thought of giving that up for Lent...yes, staying out of the Hospital, but I don't think that is going to fly. So, what I am giving up, is asking why. I am just going to live and enjoy. Why doesn't matter, it doesn't change anything, so I will just be. I have had greater peace with this new outlook. I just need prayer support that this is the first Lent that I don't mess up my sacrifice...not too much longer to go;0)
Love to all my friends and family,
Jen
This just in...Jen Walsh just aquired 50 chickens, has recieved 50 valentines, and do you know what question she just answered about your personality? This and more at the new...and improved Facebook
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Hey Jen...
ReplyDeleteGlad IVIG is going so well for you! It was HORRIBLE for me.
I'm so with you on the empathy thing...I care a lot about people too. My husband is not so empathetic. When my best friend of 12 years got diagnosed with stage 4 cancer, I had a really hard time emotionally. And yes, I went downhill physically. But what am I supposed to do? Pretend I don't care? Don't know how to do that.
Tell Dr, Teener I said hi!
Funny, I'm considering writing a status update to the effect of: 'if I see anything about mafia wars or farms or anything on my live feed, you're getting deleted.' I love facebook for the same reasons you mentioned. It's a pity that it gets filled up with trash so quickly.
ReplyDelete