Wow. OK. Just because I have not been blogging very much, does not mean I have been laying around doing nothing. I have been taking lots of pictures, but never enough. All month we have been busy with things other than multiple sclerosis. I have used this diagnosis to change my life. I have no plans to go back to work anytime in the near future. I'm getting back into yoga, acupuncture, massage, chiropractic medicine, etc. I have unfortunately been forced to yet again reevaluate my relationships, as it becomes even more clear who really supports me and my family when this happened. I am focusing my energy on my friends and family who care and show it, and I have moved others to the back burner. They can wait. My priorities are those around me who have been there for me and my family, rain and shine. I'm not listening to people who try to tell me how I should be feeling, and spending time with people who allow me to be pissed off and depressed and respond by pouring another glass of wine, making a really bad joke, or just crying with me.
How to annoy me? Tell me how great multiple sclerosis can be. Tell me to "just not think about it". Tell me to just "look on the bright side". Or better yet, just ignore me when I disclose to you that I have been diagnosed. Really want to get under my skin? Offer to help me before slowly backing away when I call your bluff. I'm not going to let people use me to make themselves feel better. Now is the time to call in favors. Now is the time I need help and not slogans. Now is the time for those who care sincerely and genuinely to step up. I don't have time for games. I'm leaving all of it in the dust. Want to be my best friend forever? Say what one friend recently did, and it melted my heart. "I don't know what to say, so I'm not going to pretend to, but I'm thinking about you all the time. Anything you need, just ask, but I'm just going to follow your lead. Are you free for lunch?" How refreshing.
Or, this is pretty awesome: my friend Ale and her son Joaquin sent hugs to my family all the way from Mexico. If you ever find yourself in Cabo, please buy this woman a drink on me!!! And hug her delicious son, Hazel's betrothed.
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So, I received my final diagnosis of Probable Relapsing-Remitting Multiple Sclerosis (RRMS) last Monday when the results of my spinal fluid came back with all three markers for MS elevated. They will take the "Probable" off of there after I have a second flare under my belt. I will be going for a second opinon, of course, but I'm starting treatment in the meantime. I had three days of IV Solu-Medrol infusions at the hospital to try and end this flare with minimal permenent damage. That stuff is horrible. Jamie stayed out of work to care for Hazel and drive me around. I felt so awful, tired, anxious, racing heart, short of breath, craving carbs, retaining water, sore, pressured speech, totally unable to sleep. Ugh. I hope I don't have to do that again. I'll be starting Copaxone injections at home as soon as the nurse comes to train me and I'll be doing those every day for the rest of my life or until a better treatment comes long. Come on, stem cells! And so it goes...
I have been taking a ton of pictures this month, so here are the highlights of Hazel Porkpie in her Life Continues Series. She continues to grow and change every day and amaze even the most jaded part of me. She is crwling all over the place, into everything, grabby, novelty-seeking, laughing, smiling, so happy...
Hazel loves eating peaches, right off the pit. We peel the skin off with out teeth, and strip her down naked and she just goes to town! It's messy business.
We picked FORTY-FOUR POUNDS of peaches at Cider Hill Farm!
The Perfect Peach
A playdate with Anson, Hazel's bud.
4 comments:
amanda, the smile that hazel puts on your face brings tears to my eyes.
hazel, if you get much cuter or smarter the world is in for trouble.
Hazel, if you get much cuter or smarter, besides the world being in trouble, JoaquĆn really HAS to meet you, you guys are gonna ROCK THE WOOOORLD!
Kiss-kiss to Mama, thank her for posting the hug picture here, we r so honored to be called friends!
What a great set of pictures! It would take me three paragraphs to comment on them all so I'll just leave it at TOO FRIGGIN' CUTE!
I can't believe Hazel is crawling and pulling herself up already...you go girl!
amanda- im LOVIN the pics!! ADORABLE!! I hope your doing well- wish i could help....im sorry if i ever said anything that was not-so-helpful....i never know what to say to be encouraging and supportive!! but- know that im thinking of you guys. oh and i LOVE the rug in the last pic! lol. :)
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