wish it could be a better one! 

i haven’t been feeling so hot lately so i’m keeping this one short.  yesterday was my birthday and i wish i felt better. i was so looking forward to spending the day with my family but once again i couldn’t fully be “there”.  for months and months now i hate that i can’t be present where i am; i am totally pre occupied by my body screaming at me for attention with joint pains, muscle aches, general fatigue, headaches, chest pains and my newest addition, shortness of breath.  for almost a week now i feel as if someone has punched me in the stomach when i wake up.  your whole day changes the instant you wake up feeling unwell.  everything is set in an “off” key.  nothing feels right, you’re never yourself and you dream of an entire day of just feeling “good”.  you become dual people, dual personalities.  it’s so hard.

this was most disappointing because i had been feeling truly stellar for almost two weeks.  i thought i could be the really bad days behind me.  and let’s be honest. no matter how old you are, you always want your birthday to be great. you don’t want to worry about how you’re feeling. i wanted a carefree day. i want carefree days.  shouldn’t a 26 year old have a carefree day or two?  (ok, enough with the 26 i know, im just getting used to it haha)

just gotta keep on going. and i’ll be ok with it.  just not right now.

send some springtime  lovin my way! i’m sending it your way.

in bed again today.  although this weather doesn’t make me feel bad about it. 

i’m really suffering with this stomach thing.  my doc says there is a real nasty stomach virus going around that lasts for days but since i am especially sensitive it seems to have hit me hard and left my poor tummy in disarray.  since we have to be extra careful of infection (because of the Kicker) doc gave me an antibiotic that i’ll take for three days.  i HATE antibiotics and what they do to the body, but i guess it’s better safe than sorry.  

i forget how sensitive my body is and this was certainly a reminder. i’ve been in so much pain for the past couple of days and i tend to ignore it until it’s really bad.  even using the ticker as an example.. i have to stop doing this and pay attention!!! so, who knows when i’ll feel better but for now, i’ve accepted the fact that i have to rest and take the meds.

don’t you wish you could buy good health?  i was thinking of that yesterday.  my mom asked what i wanted for my birthday and from the bottom of my ticker, there isn’t anything i actually want besides a healthy, full existence.  it’s obviously something i have to give myself for my birthday.. by eating and living “right”— but it would be so so awesome if i could just go out and buy a shopping bag full of “good” days to use on days like this.

i hope i don’t sound too down, i’m really not.  i guess i’m just in more of a reflective mode. 

 until tomorrow…… 

 keep warm and dry!  have a brownie sundae for me because that is what i am craving right now.

i haven’t been feeling so great for a couple of days.  i think i have a stomach virus. ICK.

hopefully this will pass soon. let me tell you, it’s NOT FUN.

back to bed.   

Today was the day.  The long awaited appointment to get the voltage turned down on the Kicker.  I heard about this day when I first got the Kicker implanted: “after 6 weeks you will visit your doctor to have the pulse turned down to conserve the battery in your device”.  Looking back to that day now, it seems like a dream and a lifetime ago!

I feel I have come so far especially over the past two weeks and I’m not stopping here.  I am constantly amazed at just how bad it was and for so long. The entire summer it progressed and only in one direction: DOWN.  I made excuses, thought I was out of shape, thought I had one too many glasses of wine with dinner the night before, maybe it was a flu? eating bad? All these things go through your mind.  Never did I think I would get so ill, so exhausted and naush to the point that I did. Never did I think my heart was failing.  Cut to present day and it is the exact opposite!  We have been going no where but UP and I am a different person.  I actually did forget what it’s like to feel good.  I know I keep saying that over and over in these blogs but I don’t even know how else to express this.  I cherish each day so much.

At the doctor I was told I am looking good on all fronts.  The best news of my day is that they were actually able to make the fluttering go away!!!  Yup, it’s gone!  I lied on my back, my side, did some side bends… and I am relieved to tell you that I did not feel that Kicker kick once.  Phew. Peace. Rest!

I had a great day.  An amazing friend of ours joined me today.  He is a photographer —a very talented one at that.  He was inspired to tell my story the in his language; so it was a day of photo documentary.  From morning routine, to the doc, through the streets of NYC … all me all day!  It was fun and we (Thomas and I) are blessed to have friends like Pants and Jiff to keep us inspired as well.  Don’t worry, I will share some photos when I can.  In the meantime you can check out his site:  http://www.joshuagriffler.com/

I am going to get to some reading now and catch up on emails.  I am loving that the sun is still shining at 5:30 pm!

xoxo

a low voltage Lauren 

Been walking around for about 2 hours in the neighborhood today. Ran some errands. It felt good.

I am so tired now so it’s siesta time.

Tomorrow is the day when the ticker gets adjusted.  I cannot wait because it has really been bugging me.   I am hoping that once it is tuned down a bit it will solve the problem and I can finally lie on my back or my left side!!!

Updates tomorrow.

It’s been pretty steady. 

I am almost afraid to say it aloud but I am going to anyway because I want to share it with you:  it’s been almost two weeks of good days and making progress.  I can do more and more, I feel stronger and I am walking more blocks.  For awhile there I was really affected because I had gotten to the point where my mind was playing tricks on me.  I was scared to leave the house!  I was scared to be alone!  I was freaking out! I couldn’t have any of that so I am proud to say that I decided I would basically put myself into (mental and physical) training. I set a goal to be much much more “able” by the end of march.  This means walking distances without feeling tired, getting back into shape, being outside more and of course, those things I haven’t encountered in quite some time… steps!   I walked up a couple flights last week and my legs were so wobbly afterward that I had to get on the floor, stretch and rest…

I saw a physical therapist/massage therapist yesterday who is going to work with me to get my core strength back.  I lost so much weight, mainly muscle mass throughout this and I want to feel strong again.  Also, being that the Kicker is a foreign object, the therapist explained to me that my alignment is very off.  I am subconsciously favoring my left shoulder and arm which has shortened my pectoral muscles and basicaly tensed up my entire upper back and neck area.  This has been very uncomfortable and at times painful.  He taught me some easy stretches to do at home and know that I am aware of this I am trying not to favor the traumatized area.  After all, it doesn’t really hurt so much anymore, scar tissue has built around it so I can be sure it’s not going to pop out or something (an everyday irrational fear of mine).

So, that’s what I’ve been up to.  Attending to my body has been number one.  I’ll say it again, it is so so so important to me that I feel strong again.  

An update on the adult stem cell therapy:  I am on my way to applying.  There is a very long process and it’s only the beginning but I have spoken to a patient care coordinator and she explained everything I would need to submit with my application.  It’ll be a journey but I’m prepared to take it if it means giving my ticker some new cells, new tissues, new life…

One last thing I want to leave you with:

I actually went OUT. Yup!  Last night!  It was my friend’s birthday and I had a full night out to dinner. Then Thomas and I decided it would be a good opportunity to test the limits a bit and since I was feeling so good I would go with everyone to the club afterward.  You know, put me in a new atmosphere. Well I am so glad I went.  I stayed only an hour at the club with everyone (we are very careful to not push it).  It felt soooooo amazing to be out and feeling good! Truly good! It wasn’t even about the actual club per say it was just the fact that I felt like a person again!  I forgot about everything for awhile and I was so incredibly overjoyed to be with my friends.  One thing is for sure,  I appreciate everything so much more post Kicker.  I hadn’t been out (talking in the nightlife scene) in months (seriously, like 6 months) and I felt alive when I left there last night. 

Tomorrow, some family time.  I can’t wait.

Until the next time…. have a great weekend and be happy!

Went to the doc today (not the cardiologist).  It was a routine check up and we discussed coming off of the steroids completely which I am very happy about.  Since these steroids take such a liking to your body it is tough to come off of them.  My body is quite dependant on them so my doc outlined a schedule as to how I should taper off of them.  I will be really really relieved when that is over with. They aren’t pleasant drugs and the can end up doing harm to your bones and other organs if on them too long.

A week from today I head back uptown to get the Kicker tweaked!  This upcoming visit is “the one” where the “voltage” is turned down.  It has been quite uncomfortable having this fluttering for so long so I am very hopeful it will be gone once the Kicker is pulsating at the strength it should be.  I mean, I cannot lie on my left side or on my back without my stomach doing a huge jump or, in this case, kick! When I walk fast and the ticker starts going it’s as if someone is jabbing their elbow into my diaphragm… soo so so so annoying.  So, if this can be fixed I can spend my days feeling like nothing has changed (of course, until I look in the mirror and see the kicker).   But for right now, i am constantly reminded it’s there because of these strange kinks.

I am feeling good today and have been taking at the very least mini walks each day.  I am really working on my strength and endurance.  It looks like I will reach my goal of being strong enough to take a yoga class around the time of my birthday at the end of March!  

Lots going on over here so I have to cut this short.  I will be back tomorrow with an update on my (almost um, not strict) vegan diet and fun new foods I am eating.  Especially gluten free treats from a gluten free bakery on the Lower East Side.  YUmmmmmm.

Until then, keep on tickin’

xxL

Hello all my amazing people

I must apologize for slacking on the blog lately!  I have lots of news though, so I can fill you in:

I have some doctor appointments coming up one this wednesday to discuss lowering some of my medications including these icky steroids that i have been on (not a fun drug to be on).  I am excited to be tapering off of them and it will be a great day when I do not have to take them any longer.   Then, the following wednesay is a big day for the Kicker, she will be tweaked and her “voltage” will be turned down hopefully making me a lot more comfortable as anyone who hangs out with me can tell you there is still way too much jumping around my stomach.  It looks like there’s an alien in there!  I am really really hoping this last tweak will fix it and I won’t have to feel the kicker as much on a daily basis.  It is quite annoying.  While I have gotten used to it, this is definitely something that cannot go on for the rest of my life.

Some good news on the front.  We are working stedily toward a fundraiser.  This was an idea my friends approached me with months and months ago and to be quite honest it took me some time to warm up to it.  But, it was after the Cleveland trip that made me realize just how necessary this is —these expenses can certainly be financially devastating to a family.  With all we have on my agenda for 100% healing, it is a good idea to have the funds to get the treatment I need.  I have my friends and family to thank for all of the hard work we’ve been putting into this.  It will be an exciting ride and an extreme relief to have what we need to move forward in Cleveland and with the stem cell therapy I have been doing extensive research on. 

The very best news I have to share with you today is my progress in my everyday life.  In the past week “something” clicked where I know I am over a hurdle.  I am able to walk around and get out of the house on a daily basis.  Of course, I am listening to my body and I don’t push it (I learned my lessons the hard way) but the ever present state that I couldn’t shake of feeling like a prisoner is slowly fading away.  I am not so afraid to head out on my own , I  am taking longer and longer walks with each day and I can enjoy my friends when they come visit instead of sitting hunched over at a table with a headache while they talk and I try to listen/ participate in conversation.  Bottom line, just noticing these little things has boosted me up so high, that alone has made for incredible improvements.  I feel like a little puppy who’s just been let out when I take these walks.  It’s cheesy but true!  I am just soo damn happy to be outside and walking —that’s all I need!  My entertainment is walking the streets of NYC, going to the deli to pick up some things, having lunch with a friend.  It’s been nice.  I had set up a goal for myself to be back in action by spring (specifically my birthday at the end of march) and at the rate I’m going it looks like that is very possible.  So, I look at it as if I am in training for a marathon and do a bit more with each day.

I’m sticking to a “loose” diet of low animal products, no white stuff like starches and sugars and low gluten.  Lots of greens and veggies and lots of tofu.  I have leanred to make some pretty tasty dishes using my vegetarian ingredients and I must say I truly do feel better when I eat light and healthy.  I notice a difference in everything from my digestive system to my muscles and joints.  I think I have found a good balance that keeps me satisfied yet healthy.  The toughest part is staying away from my lifetime love and cure all: chocolate.  But, we all can treat ourselves now and again and the good news is dark chocolate is GOOD for you!  So, that’s my excuse and I’m sticking to it.

So, get ready for spring it’s just around the corner I can feel it.  New beginnings, rebirth, and less clothes!  (I can’t wait to retire my long down jacket).

Have a great great one.

xoxoxoxo