Started to feel like a person again yesterday. I had energy, and my body hurt only a little compared to what has been going on this previous week. So what did I do? I did everything I had been wanting to accomplish in the past week in one day. I push my body to the limit! Walked to the grocery store, went shopping, cooked, anything to prove to myself that I can still do things!
Paying for it now but it felt so so good.
In bed today. Happily achy.
I’m sure it’s no coincidence that this major pain flare up has come a month or so into one of the most stressful times I’ve ever experienced. Yes, I am STILL in pain. It will be a week tomorrow that this heavy discomfort has terrorized my bones muscles and joints. They ache for relief. I do anything for an hour or even ten minutes of sweet relief.
Something about this decision, the entire mess of emotions that come with hearing I most likely have to get open heart surgery. It is one of my biggest fears… not just the surgery (oh man that surgery), but the fact that I was on a high. I felt amazing, coming off a summer of rebuilding and replenishing I was brand new and ready to start living fearlessly again! It was like the record stopped that day in my cardiologist’s office. I was aware how sad I became that day but I am only now realizing just how much damage was done. I’d been crushed. This again? So soon?
As has always been the case in the past I will do whatever it takes to keep my heart safe and working the best it can -scar tissue and all. I’ve been crushed before and I get up. I can do this, I know it. It’s the in-between that’s tricky. The waiting, the doctors, the lack of trust I have in doctors, the planning, the anticipation… will I be… OK? How do I know what the “right” decision is? This is my life… how do you even begin to make decisions like this? The thinking thinking thinking, the sleepless nights, the worries, the fears.
The questions, the waiting, the visions of hospital beds and operating rooms, I think they have all took to hiding in my muscles and joints. It feels like I’m carrying it all with me all the time. How do I just let go?
Had to cancel acupuncture today. I usually drag myself there regardless of how I feel because my body responds so positively to each treatment. I have to be in a lot of pain to cancel last minute, wish I didn’t have to…
Now, to take a pill or to not take a pill and just lie here? Major decision.
I have many coping mechanisms I use for pain. I even see a psychiatrist that specializes in pain management for some time now… we work on things I can do instead of taking pain meds or sleep meds. I’ve equipped myself with many tools that just don’t seem to be working this time around. I can’t help but wonder why so much pain? And why now?
On Thanksgiving I sat in a room filled with family, struggling to get through the day. I was looking forward to spending time with the people I love yet while I was there I couldn’t enjoy much. That morning I had woken up to major aches and pains all over my body. No explanation, it was just “there”. I finally took a Tramadol (painkiller) during dinner which took the edge off the pain but didn’t do much else besides make me shaky.
The thing about being in a public situation when you are dealing with this bone crushing pain is that you become exhausted from trying to just “be”. Every conversation, every hour is blurred by the piercing distraction of your body. Needless to say, my Turkey Day was not ideal. The next day (this past Friday) I was in bed all day. I took a seriously serious painkiller and surrendered, unable to mentally deal with the pain any longer. It gets to a point where you just can’t convince yourself anymore.
By the end of the weekend I was excellent! Walking around all day yesterday, I wanted to take full advantage of my working body. I got up early and spent the entire day walking walking walking. Cut to today, and that pain is back.
I write this from bed wondering if there will ever be a time where I don’t go through these ups and downs. Pain/ no pain. Energy/ no energy. Such an erratic way to live. When I am this desperate I consider going on the Prednisone again (steroids) although most of me believes that no amount of pain is worth the mental anguish those pills bring. Sure, your body feels better but you are a completely different person –typically of the unpleasant kind.
I feel worn. Wrecked. Ravaged. I am using this time in bed to make phone calls to different institutions to find out what they can do for my heart.
It’s a gloomy day in NYC.
I haven’t been feeling well. There is definitely a flare up going on. Unspecific Inflammation as the docs call it. It means I have inflammation in my body, they aren’t sure why or where, and it makes everything painful. The rain exacerbates it to boot.
When it’s really bad I consider going back on the ROIDS but then I remember how off-the-rails-insane I was on those meds and I reel it back in. I just have to deal.
All I want is comfort, relaxation. I found it in blueberry pancakes today. I do not eat much sugar anymore but I just wanted something familiar and warm. Something that reminded me of being a kid, feeling great with lots of energy.
Now I sit here blaming myself for my pain and feeling incredibly guilty for eating sugar. Sugar directly causes inflammation. I know this. So why do I still go for it?
My head is so messed up from everything. I enjoyed them going down but the guilt is too much to sit with. This is crazy right? Doesn’t make sense. But it’s my life right now.
Fluffy blueberry pancakes with maple butter
Slept two hours at most last night. Having a pain flare up, for what reason I do not know. Some days I cannot deal with the mental battle of trying to manage my pain with excercises, visualizations, etc.. It’s been a long time since I’ve done this but today I just couldn’t deal with these intense aches and pains on top of no sleep so I just took my heavy pain meds. I hate to cave but it was very necessary. I hope it works very soon.
Feeling better today. I’m just exhausted. Didn’t sleep much.
Whatever happened yesterday was weird and short-lived. I felt so sick when I got home after the fainting spell that I actually thought it would turn into something horrible like the flu. I couldn’t move my body. I overdosed on Vitamin C just in case, and by midnight it was as if nothing had happened. Crazy.
I’m hoping this was just a passing “thing”. I guess we will know when I attempt to eat a meal.
For the past two days I have been in hell. Up until now, I have gone weeks and weeks (with the exception of three days) without pain. The last few times I could (almost) pin point the reason.
Now I can only say that the weather does absolutely play a part in flaring up my condition. Two nights ago I lie in bed in tears, unable to move with having just come in from the cold rain. The pain hadn’t been that extreme in a long time and I can’t help but wonder why and do things like blame myself for eating a piece of white bread or some chocolate. So not only am I in bed, where it hurts to lie down or move or breathe, but I am also beating myself up. I convince myself it must be my fault. Basically, torture.
I have arranged it so that no matter where I am in the world I have an arsenal with me to use in situations to make me comfortable. I basically travel with everything I have at home so that I feel prepared. This time isn’t any different. I have tons of meds, heating pads, supplements, but I didn’t know what to do this time around. I finally took a Xanax around 4 am (a larger dose than I normally take) and waited for it to knock me out.. Two hours later it worked.
The next morning (yesterday) I had to take a Tramadol to get out of bed. I don’t like to be in the habit of taking pills –especially painkillers. The thing is, I can feel my body loving them. Sure, they take the pain away but I become very aware of how my body feels as they begin to wear off. It wants more more more. I ignored it this time around but it was hard seeing that the pain was so intense. The last thing I want out of this is to add “I am hooked to painkillers” to my list of issues. Let’s keep the problems to a minimum here.
So today is the first day I am trying to deal with it without the help of any medication. I feel achy. I feel tense and creaky. My joints pop and squeak. I try stretching and doing yoga but my head is so tense that I can barely move.
I try so hard to not be angry at my body for making me feel so awful. Wish me luck I’m hoping I can do today without Tramadol…
Miserable
Lauren, you will get better! I still owe you some pizza.
Right before your cellphone died?
WHY WAS MY PICTURE REBLOGGED?!
For those of you who do not blog or may be unaware, I have used the site Tumblr to power this blog. I started with Tumblr because it was simple to create and organize my blog here. Over the past year Tumblr has grown into it’s social networking capabilites and a community has developed surrounding people’s blogs, and other’s comments and “re-blogging” of said blogs.
I have never participated in the social networking part of the site. I keep to myself and to my own blog. I only write about the health aspect of my life for my own “audience”. Since I do not comment or reblog others’ posts I assumed I did not court those who blog simply for attention and for being rotten human beings.
As mentioned, I started my blog for a very personal reason with hopes that I might be able to help those suffering with an autoimmune disease and raise awareness for this epidemic that is sweeping America. Never did I ever think I would come to my computer to check on my blog and find that someone has used one of my posts as an opportunity to make fun of me or make some sort of (unfunny) joke. It was in one of my darkest hours… so scared, in so much pain that I take a picture of myself in the ER after many hours of suffering. Can you imagine how surprised I was to find that it had been re-blogged across the Internet as a joke?
I have made the decision to stop my Tumblr immediately. I will be moving my blog over to a platform that I am more comfortable with, and will be posting there from now on (I will notify friends and family of my new address). Sure, people can argue “Lauren, you risk this when you put yourself out on the Internet.” Sure, understood but lines do have to be drawn somewhere and this is mine. I can at least take my content and my story to a place where I do not have to witness a childish community of bored people pick each other apart from behind a screen –-very brave indeed, everyone.
You can find the reblog ABOVE that has angered me so.
This “JOKE” was posted by a Brian Van.
I would like to think this person was not personally attacking me (since I do not know him at all), but maybe all you Tumblrs should think before you reblog. You’ve taken the meaning out of a blogging platform and turned it into a glorified chat room.
Lastly, thank you to a true friend who defended me.
