This is a new thing:

Burning, tingling in my right thigh for hours followed by muscle cramps in the same area.  The burning feels like my bone is on fire, radiating heat to through my connective tissue, nerves, and skin.  The tingling feels like you would as if you were being tickled by a feather (much more pleasant than pins and needles, say but overall unpleasant just the same).  It starts on the outside of my right thigh and hugs around the back part.  It is worse when I sit or lie down. This is the third time it has happened in a week… on Saturday it was driving me insane as I try to rest in bed.

What now?

It’s working!

I have been fine.  Eating great. Even gaining weight.

Yesterday I came home from a long relaxing trip to whole foods where I bought all of these yummy things that I could not wait to eat.  When I got home I felt it, that all too familiar feeling in my stomach.  I got scared and sure enough, it got worse.  That terrible cramping…

I immediately called Dr. D.  Where was the Viagra he promised to send?  Because I needed it now to try out.  He never sent it because he “didn’t have any samples lying around” so he called in a prescription for me (not covered by insurance… four pills = $85).  I called my heart failure doc and she gave me the OK.  Apparently they are using Viagra in heart failure patients to regulate pressures and for things like pulmonary hypertension.

As I wait for the Viagra to arrive, I had to take a shot of Dilaudid (heavy duty pain med) because the pain was just too much.  I spent the night super sick and super naush.  I couldn’t sleep well.  I never took the Viagra because I was afraid —didn’t now how I would react.  But, this morning I couldn’t take it anymore so I popped one and now we play the waiting game.  So far no changes…

But this is where things get tricky.  I had no appetite yesterday and when the stomach attack starts there is no food at all.  I haven’t eaten since Sunday night now, I can’t really drink (too afraid it will trigger something) and here is where I risk losing weight again.  This cannot happen!

Now, why did this happen?  And so close to the last one?   It just doesn’t make sense to me at all.  I hate the mystery in these stomach attacks.  It’s just too much.

When I was going in to get my pacemaker/ defibrillator implanted in last January (2008) we were aware that a bunch had recently been recalled because the leads (the wires that link the machine to your actuall heart muscle) were bad and failing.  This was terrifying to me then, and they assured me that my leads were not the ones in question on my way into the operating room.

Medtronic, the company who makes my pacemaker / defibrillator (my Kicker as I call it) has a big problem on their hands though… what about all of these people who had bad leads implanted into their hearts?  When I got my Kicker I was told that they never remove it because the procedure of pulling the leads out of the heart muscle is too risky.  When they implant the leads, they actually stick them into the heart through a vein and they wait for scar tissue to deveop around it to hold them in place.  This is true for three places in my heart. I had to sit up for a day after the implantation so that the leads would take hold and scar tissue would form properly (“just what I need” I thought at the time, “more scar tissue”).

I feel terrified for the people who must undergo a surgery like this to replace “bad wires”.  Awful stuff.

http://www.nytimes.com/2009/04/07/business/07device.html?_r=1&th&emc=th

Over the past year and a half of my health “crisis”, one of the items at the top of my list of frustrations is accessing my medical records.  I cannot tell you how many hours I have spent on the phone, writing letters, sending faxes, and waiting in person to access my own records or to simply find out my results from a blood test.  It is a tedious process —especially for those who cannot get around well or may be too weak to speak to the oh-so friendly employees in the records office.

I know Google Health has been trying for a couple years now but this hasn’t meant much to me considering they had paired up with Cleveland Clinic but none of my hospitals in NYC.  So, this article in the NY Times today has me hopeful that Columbia will get their act together and go digital all the way baby!

http://www.nytimes.com/2009/04/06/technology/companies/06health.html?_r=1&th&emc=th

I already correspond with two docs at Columbia over their email portal and it is lovely (that is, when they actually get back to me within a couple days —yes I am talking about you, Dr. D)!  It will be a HUGE step if these efforts are carried out well and I could access my records online.  So important.

I have been feeling pretty ok lately (eating well, able to get out and about), but weather like this just wrecks me.  It took me two hours to get out of bed today.

At the risk of sounding 90 years-old, the “dampness” just goes straight to my bones.  It feels like there is a 200 pound blanket on top of me when I open my eyes.  I lay in bed, and start to slowly move each joint and ask my stiff body to work with me and feel comfy again.  It’s like trying to start a car after twenty years.

Of course, I have developed coping mechanisms.  It’s a reality for me that on days like this (gray and rainy) I am not going to get much done.  I have to come to terms with that and then do what I can to make myself comfy.  Once I get vertical I do a “crazy dance” and swing my arms and head to loosen up.  Then I do some yoga if I have the energy.  I drink a lot of tea and I have hot compresses and a hot water bottle that I hug all day.

I have also been taking Wobenzyme for the past several months.  It is a miracle enzyme/ supplement from Germany.  I am told they swear by it over there.  I am in love with Wobenzyme.  It cuts down on systemic inflammation, and I must say that I have noticed a big difference.  I take four in the morning and four at night religiously.

I have acupuncture today.  While I feel compelled to cancel I will force myself out there.  It’s worth it for me since those tiny magic needles make me feel great and I get the added bonus of acupuncture: calming the anxiety.  Sometimes I feel like I am floating when I leave there.

Two of my awesome kick-ass friends alerted me of this Times article today (Thanks Barb and Aaron)…

http://www.nytimes.com/2009/04/03/science/03heart.html?_r=1&em

I’m ready for Sweden…. The Karolinska Institute is a BIG player in advancements in cardiovascular medicine.  Only last night I was saying how I cannot wait to get a treatment that will renew my heart muscle, I know one is out there somewhere for me.  And I know it will be soon. I want to repair some of the scary damage the scar tissue has done structurally.  I know I will be fine, and I love my heart scar tissue and all but this is great news in the right direction.

I have been super anxious about this lately.  Every once in awhile I get impatient and I want it all now!!