I have to have ultrasounds once a month! And blood draws every two weeks! Seriously, ever time they draw blood, I want to cry something like 'Do you know how much it cost to put all that stuff in me and you're just taking it out?' Honestly, with the combination of painkillers, antibiotics, and a shit-load of vitamins, they could SELL my blood for a premium price. If I gave blood, the person who got the transfusion would get a healthy amount of drugs...a 'lil boost.
Honestly...
I also had my dressings changed on my IV which is always nice 'cause it feels all clean and, you know, it always looks better when there isn't a little bit of dried blood caked around it. Nice, I know. I really am trying to work on my adjectives, so that when doctors or friends ask the classic 'how are you' or 'what is the problem today' or something else that I'd really rather not be asked, I have a wonderful arsenal of words, as to sound cold and totally pissed off that they asked. Not really, but sometimes I feel like that. I felt in the first few appointments, that they were honest to God trying to get blood out of a rock for all the words I could come up with. I thought I'd better practice in my mind so next time, I don't have to stumble through "bad" and "painful" or "icky" and really use some kick-ass words.
It comes to mind that, beyond the pain and general sick feelings, I feel deep down a sadness. That I'm here and you're there. That I'm stuck here and you're still there. And that this TOTALLY is taking an inordinate amount of time. This 'empty' feeling hits me often and makes me feel that I love you guys an infinite times the world over.
This feeling, of being lost, and stuck, and lonely, and sad, and overwhelmed, is by far, the deepest, worst, intolerable agony of all.
Hi Nicole,
ReplyDeleteIt must feel like forever for you - the day you come home ...the DATE unknown. Each day folds into the next without promise of being any closer to that day..but you ARE closer to that day than you were yesterday. That sounds weak, but it's still true.
You are closer with every hour and minute to coming back here; you have one less blood draw behind you, one less dressing change before having that damn pic line removed forever and storing it in a jar - or shooting it into space..whatever you decide to do!
And then when you are home the best part is that new days will become padding between 'then' and 'now' . Days will stretch for years and years with you being HOME, and before you know it 'today' will be five years ago and you will reflect on this day as one of many that led you to your health, that led you to making a difference for other's with Lyme disease.
xx Emma
Hang in there, and keep on writing.
Hey Nicloy- oly,
ReplyDeleteHow are you doing, hon?
I miss you soo much. Everyday I think about you and your amazing flair for life- you truly are a force to be reckoned with.
Keep up the strive. Travis says hi and my whole family pray for you.
Africa is waiting for you to come and explore. I will tell you all about our experiences. Say hi to the family for me.
Write as much as possible- your story needs to be told. Remember what you told me a few years ago... drama is the spice of life. If so- we all must be a bunch of enchiladas with jalepenos on the side.
I love you - stay strong.
love you bud,
natalie
Dear Nicole,
ReplyDeleteMy daughter, Kelly, is a friend of the Hawk's daughter Kelly in Hawaii. My other daugter, Lauren, is like you. She has chronic Lyme and is fighting it every day. Please do not give up hope. Some days it is so hard because progress is sooooo slow. It even seems non-existant sometimes. However, I can tell you honestly that there is progress. You have to just do you best, follow the advise of a true Lyme Literate doctor (not the crazy, unsympathetic ones that do NOT understand the disease) and wait. Lauren has had many of the same symptoms as you. And, in Hawaii, we don't even have Lyme. She got it on a trip we took. She is just now getting back to school part time and reclaiming her life. You will too. I know it! Aloha, Robin
I agree, it can feel so difficult at times. Even though there are people all over the world thinking about you and being there for you, sometimes it feels so alone. Just remember, you are taking action and things can't stay like this forever.
ReplyDelete