STEPPING OUT TO CURE SCLERODERMA Sunday at 10:15 a.m., a one-mile walk to raise funds for research on this degenerative autoimmune disease; check-in, 9 a.m. Sponsored by the Scleroderma Foundation. Riverside Park, Riverside Drive and 96th Street , scleroderma.org. Fee: $20; $15 in advance; free for those under 18.

I cannot make it to the walk this year but posting it on here to spread the word.

Slowly emerging from the funk I have been in all week long.

This happens every once in awhile.  I have a constant stream of worry and anxiety in my brain at all times.  It’s my background noise.  The soundtrack to my days. I don’t talk about it much, so sometimes it gets to be quite overwhelming.  When it gets to the point where I just feel panicked, I have to take a couple of days and regroup.

When I stop and really think about everything I feel so lonely.  It’s hard to explain… eventhough I am lucky to have so many people around me who support me and love me I still feel like no one could ever truly understand what this is like!  So, I get angry, and I get sad and I just let it happen and eventually it passes.  This dreary weather doesn’t help either (what is it… eight months of clouds and rain now?)

So, I’m back from the bad place.  My body is feeling better, it isn’t weighed down today.  I am looking forward to actually getting out of the house and interacting with the world this weekend.

Since this has been the first official warm day, I broke out the summer wardrobe (finally)!

I wore a flowy tank that really exposed my Kicker (pacemaker defibrillator).  The minute I stepped outside I realized that I haven’t had my chest exposed on the street since last summer. I also immediately realized how hard of an adjustment this was for me and how self conscious I felt last year around the same time.

EVERYONE stares.  I mean, I would too.  You see this girl and she has a “thing” sticking out of her bony chest.

I could lie and say I am totally confident and people can stare all they want, but the truth is I have been uncomfortable all day long.  It’s not a nice feeling.  I know that when I speak to anyone in a store or restaurant or on the street this strange looking thing is the only thought on their minds.

I know I’m posting this at the risk of sounding super vain.  I do appreciate my Kicker but it’s a constant reminder.  I can never have a day where I can forget about my troubles.  Especially in the summer.  I am in a really bad mood.

I am in bad shape today. I feel awful. Of course this weather is the culprit. My muscles ache and I’m crazy fatigued. I feel like I worked out at the gym for ten hours and then got hit by a bus.

Cure.  That is such a loaded word for me.

I know the meaning. Especially when it is in the sentence “there is no known cure for what you have Lauren.” And I know it’s just a word, but I long for everything it represents.

I used to dream of a spontaneous remission and truly believe it could happen to me. I would wake up and think “is today the day I am magically better?”  I still secretly hope for that but I am now focused on actually curing myself.  This is also the opposite of spontaneous.  It’s hard work and I understand it will take a long while.

Still, when I read something like this it makes me very happy.  I’m already all over it… reaching out to my healers in the magical world of Chinese Medicine… “where can a girl get some chang shan around here?”

This past week has been a nightmare. Literally, one long nightmare.  I actually dread when it’s time to get to bed because I am having such a difficult time.

First, it’s hard enough for me to fall asleep and when I do it’s torture.  I woke up at 4 this morning sweating, in a panic, and completely terrified from a dream I had.  It’s happened almost every night for the past week.  It’s terrible.

It takes me forever to realize it was just a dream and I cannot move for the first couple of minutes I open my eyes.  Super disoriented and feeling panicked, I don’t know how to stop it…

Is it my meds?  All the chemicals in my body?  Why do I have such awful horrible GRAPHIC dreams?

Even if I knock myself out with a xanax it happens.  And when I don’t it happnens.  How am I immune to xanax?!

I am forcing myself to stay awake because I do not want to have a bad dream again.

My last post is about something I have been seriously following since last year.  I have even spoken to a Vescell ambassador because at some points I am just so eager to fix my heart that I cannot wait any longer!  Last year I was like, get me on a plane to Bangkok, NOW!

Of course, I ran it by some of my docs at the time and their general feeling was to wait a bit.  I heard a lot of “in time there will be a treatment for you Lauren” and “the technology isn’t quite there yet in a few years it will be a different story”.  While I am not sure how I truly felt about these cautionary sentiments at the time it definitely made me slow down a bit and quiet my impulsive NEED to get it done NOW.

Overall I think waiting is a good idea but I don’t want to miss a good opportunity if it’s out there for my heart.  It’s often hard enough to even find information that can help me and then I have to process it, check it out with the docs, etc…  I wonder what THE treatment will be for me.  And when?

Some days I feel like my life is a waiting game.

I dream of the day we look at my heart on an Echocardiogram and they tell me that those scarred walls are moving again…

In bed all day today.

I managed to peel myself out to get to acupuncture at noon and while it helped me (as usual) it wasn’t enough to elminate what I’ve got goin’ on over here.

Was it because I pushed myself on Friday?  Was it because I went food shopping?  Is it my steroid dose?  Was it the piece of brownie sundae I snuck last night at dinner?  The fact that I haven’t slept?  I go nuts on these days!

The truth is, I never know what causes this.  I could be doing everything “right” and the painful days come.  Far less, mind you, but still just as bad.  Been in bed and I have big plans of moving to the couch tonight.

No Tramadol, just dealing and trying to keep my mind occupied.

Why am I awake at 4 am again?

I cannot sleep.  It’s a problem.

Forcing myself to stay away from google and the like.  I have a bad habit of reading about medical issues when I can’t sleep.

What to do…

Isn’t it weird when you are tired but awake and buzzing?

I have acupuncture in the morning.  We are going to focus on sleep and anti-anxiety.  That sounds nice. And necessary.