In the ER and nothin has happened. Talked to the doc once, got some fluids and then … Waiting waiting waiting. I am so overly exhausted, so tired of being in pain. I feel so on the edge, I’m jumpy and irritated. I HATE ERs. No one pays attention to you. I had to tell my nurse to clean my arm with an alcohol swab before she drew my blood. I can’t take this steady stream of head ache any longer. I came here for help and I’m more uncomfortable than ever.
Party in the ER
Here I am back in Columbia’s ER. After two days straight with a crippling headache, I decided to come and make sure everything is ok. I never usually get headaches and I was dizzy and feeling faint. I was so worried. Plus I’m in a lot of pain. So here I am. Second ER visit this year. Not happy about it but at least it’s better than last year’s grand total of 11 hospital stays. I was here an hour and a half before I even got an ID band… What’s on the menu? A CAT scan of my head and a spinal tap!! I’m so nervous about the spinal tap. Yikes. Here we go….
Last June I was admitted to Columbia for a heart transplant evaluation. It was there in my hospital bed that I had a major moment.
A social worker had come to visit (all part of the evaluation). During her run-down she explained to me that not just anyone could be eligible to receive a heart (or any organ for that matter).
When deciding, they look at every aspect of a person’s life. Will this precious heart be put to good use? The decision makers will only give a heart to those who have family and friends to support them. This isn’t just for the horrific recovery period right after the surgery, but for the necessary support to go on after that. I remember a doctor or a nurse telling me one time at Cleveland Clinic that if there was someone in prison for many years who needed a heart and this person had a big loving family for support, he would get that heart over someone else who had never broken the law yet didn’t have anyone in his life to take care of him.
I remember feeling two things after the social worker left. One was grateful: “thank you for my family, thank you for my friends.” I kept saying it over and over. The other was a very deep joy inside me. I had just been given the opportunity to figure out one of the secrets to life…
You hear the same cliché’s over and over again that basically say “it’s not where you are but who you’re with that matters”. And yet it was never so true for me until that day. How do you define your life? Do you have the chance to perform good, selfless deeds only to make someone you love happy? Do you know true love in its simplest form?
I realized then that it would be my relationships in life that would heal me. It would be my bonds, and my deep love and appreciation for myself and for the people in my life that would get my mind (and most importantly my scarred heart) through some very difficult times. It’s as if I woke up, and I remember that day because until then I was lost.
During the worst parts of this ride I didn’t know how to act. There were times when I was so terrified I couldn’t see my future, and all I wanted to do was hide.
When I first found out about my heart in October 2007 the three months that followed were my all time low. I couldn’t sleep at night because I thought I would die in my sleep (This was before my pacemaker-defibrillator was implanted). If I did sleep I would wake up in a panic, sweating and confused. I would not leave the house, couldn’t shower alone, or walk to bathroom alone at night. My friends and family would call and I remember not wanting to talk to anyone. I didn’t want to be close to anyone, I didn’t want visitors. I wanted to be alone. I do not know why this was my initial reaction. I had mixed feelings of wanting to hide what was happening to me, and at the same time I wanted to protect everyone. I didn’t want anyone to ever feel as terrified as I did. I thought that if they saw me they would know just how scared I was. I remember feeling so helpless and just… blank. I couldn’t do anything.
After January 2008 when I went to the Cleveland Clinic to have my Kicker implanted, I started to change. I began writing my blog and I felt a strong need to share what was happening. I was like a newborn: I was learning how to live in my new body (I had lost thirty pounds, along with my boobs & my butt, and gained a metal box that was now protruding from my chest). I was also learning how to be this “new” Lauren. My life as I knew it had to do a 180.
Why am I writing this? Because it’s still something I struggle with every day. Some days it seems that I have had to give up so much and it fills me with rage. It makes me not want to be around other people my age who can be carefree and live their 20-something year old lives. Being around them only reminds me what I’ve been cheated out of. I get down and want to hide. Want to push you all away and be left alone. But then I remember that day, and that grateful feeling and I force myself out of the house or pick up the phone. I am always happy I did.
This is a thank you to everyone in my life that didn’t let me hide. To my friends who insist they come over just to talk, to my family who will never give up on me and to everyone for being so understanding of my ups and downs. You’ve done more for me than you could possibly imagine. You are the reason I will heal myself.
If we all shared our fears and hopes and dreams with one another other more easily it would take all of the pressure off of your own mind and body. When you want to cut the world off, take a deep breath and make plans with a friend. I promise it will make things lighter.
Day 2
It’s one of those headaches that makes you feel like you are going crazy. Can’t think straight, can’t form sentences.
A million thoughts race through my head as to why this is happening. Some scary and far-fetched, some rational. Either way, I am giving myself major anxiety.
I want to scream but my head hurts too much.
Pain all day long so far. This is awful.
Where does it come from?
A monster headache woke me up at 6 am and I haven’t been able to get comfortable since. Nothing I do seems to make the pounding subside. My body feels exhausted, my bones feel crushed and my muscles feel like they are crying.
I am attempting to lie on the couch but I cannot get comfrotable. This is the worst part of it all. I am officially mserable right now.
Crisis averted.
It was going to be another one of those terrible stomach attacks that I get. It started off with cramps and then my stomach quickly becoming bloating accompanied by awful awful side pains. And super naush.
I could feel the terror coming so before I felt any worse I popped a Cialis. I also debated taking an injection of the Dilaudid… that’s how intense the pain was (and how badly I want to avoid the hospital).
Twenty minutes later I felt completely different! I was no longer locked in a fetal position on the couch but I could now relax! I felt my entire stomach area just chill out and go back to normal. WOW. Thank you Cialis. Amazing.
I’m going to eat now for the first time today.
I love having tools to take care of myself at home. Having control over the situation is such an amazing, free feeling. I’m all smiles!
Today I woke up with my muscles aching. Like the incoming rain clouds, my body felt like it was going to explode from tension the closer it got to rainfall. I went to acupunture which always helps of course, but I started something last Monday after acupuncture and decided to go for it again today…. a hot bath.
I’ve been off baths my entire adult life. Something about them, I always felt grossed out by the idea of lying there in water. Many people have suggested I try it for my body aches and I never listened partially because I would have to exhaust myself pre-bath by scrubbing the entire bathroom before I could get in.
Well, last week I caved and I am so happy I did. Today I did it again, and I felt so divine afterward that I am all about baths now. I put some Epsom Salts in there (they draw out toxins in your body and reduce inflammation), and chilled out in the steamy hot water.
My body felt great afterward. I was almost pain free for twenty minutes.I lie in my bed thinking “ok this is what everyone else feels like everyday” it’s nice to have a body that isn’t throbbing from pain —even if it is for twenty minutes.
Can you tell I just opened my Google Alerts?
Here is another interesting overview on curing Scleroderma through diet and lifestyle changes. Rather than taking these toxic meds that treat only the symptoms and harm you in some other way (been there done that), you have to work hard and start from the source:
