Friday, August 20, 2010

Elation & Jesus

It is 3am, I am up. I don't know if it's the new job jitters. The prednisone or the fact that my mind won't shut the hell up, but I'm awake. My first day on the new job went well yesterday. I'm super excited about my team (a much older, more experienced, easy going group of inspiring women), and I like the sense of urgency without panic that I get from everyone. I am looking forward to the school year. :)

Now, as many know, I am a spiritual if not religious person. I believe in God, or a higher being, positive and negative energy, Karma, inner peace and things like that. I'm really not the kind that speaks in tongues and had to find Jesus to be "born again." BUT, last night, after my walk/yoga/meditation session, I truly believe I had an "out-of-body-holy-ghost-the lord is inside me" moment. I don't know where it came from, why it happened or if maybe it was just a "happy" panic attack, but I felt something I have never felt before. It was like I couldn't breathe but was full of air, I felt an incredible sense of joy and yes I'd even dare say, pure ecstasy. I started crying, like tears of joy, I felt blessed, I thanked God over and over again for everything He has given me and I just felt an incredible sense of inner peace and calm. Something in my heart and mind reassured me (for the first time in the last three years) that "everything was going to be alright." That I was going to be alright, like that I was going to get through all of "this"(the sclero) and I never felt more sure of it before. It was truly an amazing moment, scary at first because I didn't know what was happening, but so wonderful once I knew what it all meant.

I can't say for sure who or what God is, or even what he/she wants from the world but I know there is something greater than me, than all this somewhere out there because feelings and moments like that don't just happen, they're meant to happen and they mean something.

There are a lot of uncertainties in my future. A lot of dark roads I don't know the end to, but I truly believe that I am finally at peace with that, and that I don't have to control it all, because I can't control it all. I can only control how I respond to whatever lies ahead, and though that may prove to be a challenge I am ready for it and I accept it.

(What happens to a dream deferred? It explodes, beautifully and it's ashes turn into something greater. It's the only way to survive in this world).

Sunday, August 15, 2010

New Things

For the last month I have been trying to make it a point to try at least one new thing a week. This has proven to help my boost my moods, self esteem and even fitness levels in some cases. I have tried everything from baking a chicken for the first time, Zumba, pole dancing, writing children's poetry and Tai Chi. I feel slightly accomplished at setting this goal and actually achieving it even if it is in the little things.

Most recently it has not been easy to find joy in these small victories because I received a phone call from the doc earlier this week that could have easily sent me into a pit of depression if I had let it. So doc says that my CK levels are still up despite the rigorous meds I'm on and despite my super sincere efforts to take ALL of them EVERYDAY. (In case you forgot or don't know, CK is an enzyme in your blood that usually gets elevated when you work out and then goes back to normal, in my case if the sclero is active then my CK levels are always elevated,elevated CK levels can lead to muscle weakness and eventually damage,(muscle damage is no good in case you're wondering) like imagine if you were a marathon runner your whole life- eventually it will catch up to you.)

SO... he wants to run more blood tests because he says that it could just be an abnormality and that the elevated CK levels aren't anything to worry about since they don't seem to be going down. (Sounds like good news, right?) WELL problem is not only does he want to do blood tests he also wants to perform another EMG (Electromyography). I have had one of those is NOT fun, and I am NOT looking forward to it. This is what they do:
To perform intramuscular EMG, a needle electrode or a needle containing two fine-wire electrodes is inserted through the skin into the muscle tissue. A trained professional (such as a neurologist, physiatrist, or physical therapist observes the electrical activity while inserting the electrode. The insertional activity provides valuable information about the state of the muscle and its innervating nerve. Normal muscles at rest make certain, normal electrical sounds when the needle is inserted into them. Then the electrical activity when the muscle is at rest is studied. Abnormal spontaneous activity might indicate some nerve and/or muscle damage. Then the patient is asked to contract the muscle smoothly. The shape, size, and frequency of the resulting motor unit potentials are judged. Then the electrode is retracted a few millimeters, and again the activity is analyzed until at least 10–20 units have been collected.

In short: I'm struck with pins and needles in various muscles, as I lay on a cold table while strange people poke at me and say they're sorry for over an hour.
So you see how this could have upset me...and it did, for a short while. Luckily though...the biggest news of all, that same day I got the call from the doc, I was hired by a private school to teach English! I'm super excited about my new job and I'm looking forward to starting this Thursday. It is only part-time so no stress about getting tired or taking on too much. I will still have time to write, rest, work out and focus on bettering myself.

Although I am not excited about this upcoming exam, and I'm scared of the results (because if it turns out that I DO have muscle damage, and CK is NOT just being abnormal, then meds might have to increase, or stronger meds prescribed...booo) I am looking forward to all the new things I have yet to try , like meditation, African dance yoga (this friday), and baking fun, new gluten free sweets!

I know that if I can find pleasure in the simple things, it's possible for anyone.

"If there's one thing you should believe in, it should be yourself.." (Me, and I'm sure other famous people)

Tuesday, August 3, 2010

Pep Talks

I am not having a good day. It started off fine, I meditated, did some yoga, ate a really healthy breakfast and had a great rehearsal where I was able to move and act with ease, no pain no hard effort. Then, around noon, I had a breakdown. I cried and slept and ate a lot of junk food and still feel misearble.

I am tired of being in survival mode. I eat to feel ok. I workout to feel ok. I rest to feel ok. There needs to be something else. I don't want to be just ok. But maybe that's all there is right now. Maybe that should be enough.

It's hard for me to just sit. I am by nautre a busy body, idleness doesn't come easy for me, perhaps I just need to readjust my mentality and my expectations. I know this is a complete turnaround from my previous entry where I felt a purpose, hope and inspiration. But it happens when you live with a chronic illness. Some days are just better/worse than others.

I am convinced that I need to see a therapist or something to deal with what one of my friends calls this "something bigger than me." She says I am strong, and I am "big" but that scleroderma is bigger than me and I can't do it alone. I know she's right, I know that everyone who has ever told me that is right. But I have spent the last 12 years trying to become self-sufficient, so asking for help with my life is scary and foreign and contrary to everything I've been trying to establish for myself. But it's time. I know. This disease is bigger than me right now, and I can't go at it alone.

I need hope. I need strength. I need to not be afraid of the future anymore.