Still on my way to feeling better, just a little rundown/achy today. Couldn’t sleep last night.  Thinking about everything and anything all night.

Not much else to report on health wise.  It feels so good.. this is the first time in forever that I have gone more than a week and a half without seeing a doctor !  It does wonders for the mind.  There is something so incredibly draining about waiting in a doctor’s office.  I am happy they are now fewer and farther between.

Hope everyone is well and great!  Keep warm

love L 

Good news.  Yesterday was the first day in a very long time (probably since May/ June) that I went the entire day feeling good!  That’s right, no headaches, no nausea, no chest pains.  I didn’t want to say it aloud the whole day for fear that I would ginx it or something!  I felt like a real person again!  It was so great and I was so so happy.  It’s amazing what feeling well does to your mental state.  I think it was the good company I had all weekend     I truly forgot what it felt like to just be “ok”.

Since I feel like I am making progress I have the energy to get some stuff done today that’s been on the back burner.  You know, those phone calls and letters to doctors, insurance companies and the like.  I am planning two trips back to Cleveland for my appointments.  One is in April and the other in early July with my cardiologist where we are set to (gulp) discuss the possibilty of a heart translplant.  In my mind I never want to be “there” but it is something we have to talk about and be prepared for just incase things do not go as planned.  It’s scary but I think it is smart to be prepared.  Since I have been constanly on the quest to feel better and heal my ticker I am looking into alternative options.  One would be Adult Stem Cell Therapy … something not done in the US.  This therapy works when your very own stem cells are injected into your heart where they create new blood vessels and generate new tissue in the heart muscle itself!  Something that sounds extremely promising for someone in my case with a lot of scarring.  Check out the website, it’s amazing:  http://www.vescell.com

So, I am off to my full time job: managing my healing process.  I’ll be in the office all day long.

Hope everyone is feeling great.  At this rate it actually looks like I will reach my goal of feeling well enough to be out and about by spring… it’s just around the corner. 

xxL 

That’s right, it is the one month anniversary of the Kicker.  4 weeks ago on January 22nd I was in Cleveland getting the Kicker put in during this very hour!

It’s looking good, the scar isn’t so bad and I think within the next two weeks it should be fully healed (I still feel some pings here and there and I know it’s the Kicker getting settled in).  I am getting more and more used to the look of it and as in the beginning, I am very grateful to have it.  I feel so safe because of the Kicker.  She’s an amazing little device.

love and chocolatey hot chocolate to everyone

Things are much better today.  I basically slept for hours yesterday and last night.  Also, my mom came to hang out with me today.  It was really good just to see her and get out of the house knowing that she was with me.  She took me to get my hair cut (finally!!!) and run some errands that I had been trying to get done forever…

This has all made a world of difference.

I don’t really know what to do right now.  I am feeling so helpless because basically, I have been in bed and not feeling well since Friday.   Let’s retrace…

On Thursday I was determined to get out of the house.  I went to Whole Foods (maybe a bit too ambitious a trip) and needless to say, that one trip to the market exhausted me so much that Friday was basically a bust.  Around that time last week I started to get chest pains (for the first time since I have been home from Cleveland).  This scared me and I called my cardiologist who told me to take 2 tylenol and since I was not short of breath it doesn’t sound serious. 

My weekend continues like this and only gets worse.  The chest pains are so bad, and I am awakened by palpatations at night.  I call all of my heart doctors… 2 of which are not around on this weekend and I finally get through to my cardiologist in charge of the kicker, she is an Electro Physiologist.  I called her once at 1030 am, left a message that I was scared and having chest pains and when I had not heard back from her by 7 pm I called again.  She finally calls back this time only to sound annoyed at me for calling her and proceeds to explain to me that “this does not sound cardiac at all” and I “really shouldn’t call her with these type of things”.  WHAT?   I realize her specialty is arrythmias and the electricity of the heart but c’mon woman, have you no compassion?  I am sitting here telling you I am scared and I don’t have anyone else to call who knows me and she simply shrugs it off by saying it’s not her field.  I was beyond frustrated/upset/pissed off.  But, I tried not to focus on these negative feelings.  The saga continues into Sunday and Monday.  I tried to take a walk yesterday and felt so faint, my knees buckled and that was that.

Last night was no different.  Barely any sleep, chest pains, and palpatations.  The reason I haven’t gone into the hospital or ER is two fold:  one, I’ve been there done that before… I will have chest pains and it turns out to be muscular and I’ve just spent 6 hours in a gross ER to find that out, two… I kind of do not want to be in a hospital AT ALL due to the fact that I just did my time less than a month ago.  It would really not be good for me.   

So now, I await phone calls back this morning from my cardiologist.  I also put a call into Cleveland to see if Dr. Francis could help over the phone.  

I am so sick of feeling scared and unwell. I do not trust any of my doctors here and it’s not a nice feeling.  None of them seem to care about anything. The worst part is the unknowing; I really do not know what is going on in my body anymore.  It is very unsettling. I thought by now this part would be over. 

Hopefully we can get to the bottom of this.  I am fighting every single day just to feel ok to walk around the apartment.  It’s been really breaking me down. 

Hi everyone

I am feeling much better today.  And it is a perfect day to be feeling better because the ice rain and gray skies have vanished and it is sunny outside so I will be taking a walk around the hood today!

I was in quite a “funk” since Monday.  Sometimes these things really wear on you.  After you go through an event like the Cleveland Clinic, and you get done whatever it is you have to (in my case, the Kicker), you feel like maybe that will be the end of things for awhile and you can breathe and concentrate on healing.  But when you wake up and a new “something” is happening, or you just do not feel strong it is quite exhausting to continue to battle.  This particluar time, I just gave in, felt sad, tried not to dwell on it and lay in bed until the worst had passed.  Good news is, I think my body is slowly getting used to this higher dose of the heart meds.

As for the Kicker, the swelling has gone down a lot and I am beginning to see what it will really look like.  It’s not so bad, and I still give it a big “thank you” when I wake up in the morning.  It has helped me sleep soundly through the nights; I feel safe and that is an amazing fete alone.

I am also working on being a bit more strict on my healing diet. Now, food is one of my true loves. I grew up eating gourmet quality home cooked meals every night prepared by my mom, an amazing cook.  I love going out to eat and trying new restaurants so it was quite a shock to my system when I decided to try this diet.  It’s called eating clean, putting as little stress on your body as you can and using what you do eat for fuel.  This “diet” was quite the controversial topic in my Italian “eat your body weight at dinner” family —my mom plain out hated that I was eating that way.  She is a strong believer in a meat and potato and of course, pasta diet. She didn’t feel I was getting enough nutrients. During and after my clinic stay I strayed from the vegetarian, low animal product, sugar free,  gluten free diet that I had begun in November. I did notice that I had more energy when ate meat once in a while but lately I have really gotten bad… eating cheese and lots of meat.  I went from eating no meat at all to craving (and giving into that craving for) cheesburgers.  I think I was way too extreme before the Clinic and I lost a lot of weight so now, it’s all about BALANCE.  I want to stick to the diet because it makes me feel better but at the same time, allow for my cravings for cheesburgers, cheddar toasts from Freemans (the best ever) and chicken satay  … just not every single day!  I have read tons on diet and how it affects the healing process and I do believe that we are what we eat!  So, I am going back to juicing 2 to 3 times a day and getting that green goodness in my system to clean out the bad stuff.   But, it iiis heart day so a little bit of chocolate is allowed today

sending lots and lots and lots of love to you all  

Hello All!

I hope everyone’s weekend was warm and cozy…

Well, I am not feeling so great.  I am actually sitting here trying to decide if I am short of breath or not as I write this.  I can never tell until after the fact.  I spent all day yesterday in bed and this morning I woke up with chest pains (the first time I’ve had chest pains since returning from Cleveland).  Something is definitely off and I do not know what it is. I am totally naush, chest pains, and so so tired.  I spoke with my doctor already, he told me to take a couple tylenol and call him if I do not feel any better.  So I guess we shall see…

This may sound crazy but I am most annoyed because I had an appointment to get my hair cut today.  I have been trying to do this since November.  Pre Cleveland there was no shot of sitting there long enough to get it done I was way too weak and since I’ve been back it’s all I’ve wanted to do.  It may not seem like a big deal to anyone else but it’s huge for me… I want to do “normal” things again.  Yet, now I must cancel (again).  I just feel so blah today and a haircut can really make a difference (all the ladies understand what I’m talking about here).

On Friday it was a routine check up at the cardiologist.  We saw my heart on the echocardiogram (a sonogram for the heart) and it looks the same: the bottom wall and back wall of my heart are not moving at all because of the scarring.  He says that now my heart is stablilized with the Kicker it is time for intensive drug therapy.  These drugs have proven to get the heart functioning and he says it’s my best bet. He upped the dosage of one called a beta blocker.  I am already on this med since October and it lowers my blood pressure.  He said to expect to feel fatigued for the first two weeks as my body becomes accustomed to the new dose.  Well, I took that high dose yesterday and 40 minutes after that I was dunzo.  I had felt great in the morning but then had to spend the rest of the day in bed after taking my meds.  

So, I guess it’s another day in the house for me.  I will keep you posted on any new developments.  

love L

Today, I am off to the cardiologist.  It is a routine check up that is to be done 2 weeks after your device is implanted.  I look forward to good news from him!  I will keep you posted.

I don’t know why but I wanted to share this story.  Actually, I do know why and I will tell you afterward…

Yesterday on my way home from a doctor appointment I decided to treat myself to get my eyebrows done. It is very close to home and I see this woman almost every 4 weeks for a couple years now.  Since I haven’t been in quite some time, she was shocked to hear what had gone down in the interim.  As she got to threading, beauty parlor chit chat began as usual (to take your mind off of the pain of getting groomed).  She decided to tell me a story about a friend of hers from India that got a pacemaker when she was 22.  I was prepared for a sweet story, maybe something to give me inspiration?  Well, I thought wrong!  Basically, the end of the story was “Yes, and she died when she was 40”.  I think the look of horror on my face let her know that it was sooo not cool to tell me that!  I want to mention this woman is actually a very nice person, good with people, she chit chats for a living and yet somehow she decided it was a good idea to tell me this horror story —and this is not the first time something like this has happened to me.  She apologized and immediately started to backtrack explaining why she told me about it.  I told her there was no need, and that it didn’t really bother me.  

The first time this happened I was sort of taken back.  Why, when some people see another person suffering or going through a major life experience do they choose to share stories of grief or bad experiences where someone died?  I have been “studying” this for months now.  It never crossed my mind that the several people who have done this with me did it to make me feel bad or to scare me, I know this is not the point.  Rather, I have come to realize that being raised in a cynical world causes many people to share only stories of negativity, grief, or tragedy as a way of coping.  They unconsciously blurt out some awful story because in a way, they are still dealing with it; it has affected them and they do not know any other way to deal.  In my “study”  I came to notice that most people do this… that is, talk about depressing sh*t.  Groups find comfort in talking about tragic stories or unfortunate events.  It somehow provides some common bond, a way for people to feel better(?).  

Since I have become so conscious of this tendency that oh so many people possess I have made it a point to steer clear of this sort of talk.  Yes, sad stuff happens in the world and we always want an explanation for it.  Yes, life is no walk in the park all the time.  But let me ask… is dwelling on the hardships and hard times going to make it better?  Is talking about it and sharing stories and bringing people down really going to make you feel better?  I just wish we were all a bit more conscious of what we say.  I believe everyone needs time to themselves to grieve or be sad.  It can be a good thing to come to terms with the bad in the world in private, and maybe with someone very close to you.  But I think it’s best to leave it there… in private (of course, there are extenuating cricumstances).  Instead of going straight to the bad when you are in a group or catching up with an old friend try keeping it positive. 

Mind you, I am going through a “strange” time right now so I may be more sensitive to these things.  I noticed that it has taken weeks for everything to truly sink in and more recently I have been going through a tough time (hence, the title of my post today).  I was really fine and feeling strong (mentally) during the trip to the Clinic and just a couple of days ago it all hit me.  I even find myself crying at like “Friends” episodes.  It’s weird, I know, but maybe it is my body’s way of coping; now that I am physically a bit better I can have the energy to be sad or feel afraid. These feelings do not last for long, but they are there and I think it is natural.  Good news is I haven’t lost my spirit on the quest for healing   I am still on my way full force.

Happy Friday!

love love love

Last night the bandages came off!  Yup, it has been two weeks exactly since the Kicker went in so I was allowed to take the remaining surgi strips off the construction site.  With a little help, we slowly uncovered the scar which, turns out, isn’t so bad.  I was a bit queasy and uneasy about this considering I have never even had stiches in my life.  It’s actually pretty amazing; what they were able to accmplish through such a small incision.  Having said that I am still finding ways to “become one” with the Kicker.  Now that the bandages are completely off I can actually see the whole picture.  I am sure once I’m used to it I won’t even think twice but for some reason last night it looked so big to me again.  Every day I try and wrap my head around the fact that it’s in there, right under the skin, a magical metal box which admittedly still is giving me the creeps.  Even with all that, I am grateful to have it.  It has helped me sleep really good deep sleeps for the first time in months, I feel a little better each day, and it’s going to get the Ticker back in shape!  For that, I am grateful to it and I say so every morning.

I am feeling a bit overwhelmed by a bunch of stuff that is going on today so I will keep it short.  I am very stressed out by some stupid stuff.  Also,  I have follow up appointments with my docs tomorrow and Friday, a bit nervous about it.  

Oh, and that fluttering in my stomach?  Still totally there.  It’s all about a bunch of small meals throughout the day.

Ah, another Monday.  My agenda for this week?  Let’s get to the bottom of this eating thing.  It has been quite uncomfortable but I have managed to eat since it is one of my most favorite things to do  

I want to say I have gotten used to this fluttering sensation but I haven’t.  Sure enough, during and after each meal it is there, making my food feel like it is in one of those bouncy castles you would find at a 2 year old’s birthday party. Ginger tea has become my go to cure for this (thank you to Jessie).  It is amazing for the tummy. I called my doc to tell her the Kicker may have to be tweaked some more and she says that this doesn’t sound right —it should not be affecting my stomach/eating.  Well, IT IS so now I have to do some investigating of my own. Shocker.  I often joke about the fact that I think I could be a doctor after all of this.  Maybe I’ll practice illegally in a hidden space off some alley down here in Chinatown and really help people.

I am feeling good. So so much better than pre Kicker.  Once this stomach thing is taken care of I will feel a lot better. I am off to make some follow up appointments at the Clinic.  Oh, how I wish we were lucky enough to have them in NYC.  Sigh.

Have a great day!