Wednesday, January 26, 2011

New normal?

The elephants have been partying non-stop, playing shuffleboard on my chest with anvils, and as any good hardcore ravers, they have introduced electrical whips attacking my chest, feet, legs, and everywhere.

Monday was a scary day, and I've been mostly trying to stay calm and not allow panic attacks. I have felt legit in saying "What is happening now?". No, this isn't just a knee pain. This is severe all over pain in addition to the severe everyday pain. 

I am not used to it, but if this is what will become my new normal, I suppose I need to. I am not sure what to do or how to deal with the latest onslaught of attacks. 

Luckily I'm not dealing with it alone. I am still finding things to laugh about, although it hurts. I am a person that NEEDS to laugh and to feel somewhat normal sometimes. If I let myself think about this too much I will go into a dark place that I might not come out of.

Part of feeling normal and laughing and helps so much, is meeting people that are going through a similar hell.  Not that my friends and family aren't doing everything they can for me, and for that I am ultimately happy and thankful for, but to be in the same room (that isn't a hospital) with people that know what it is like, is remarkable.

I would never wish this hell on anyone, not even a worst enemy (and I have a couple). 

The thing about chronic illness is that it is chronic. I understand how hard that is to really grasp. It never will go away, I will never have a pain-free day, I will get worse and not better. I am not being alarmist, I am realistic. I need to be. Would I love to live with rose-coloured glasses, yes. 

I just take one day at a time, one moment different from the next and try to accept what is happening. With people by my side, it makes it that much easier.

All I have is my love to give.

Tuesday, January 18, 2011

The Elephant Party

My first week and a half in SoCal has been amazing, I haven't used the chair since I got here. This doesn't mean the pain is any better, but that I am a bit stronger. Some days I can do things, some days I can't do what I did before. This is the nature of this beast.

Except yesterday. Had a very rough day, epic pain and the worst costochondritis ( ) attack I have ever experienced. It is extreme sharp pain, I describe it as elephants sitting on my chest, and stabbing in between my ribs and crushing. It's very alarming, as anyone who goes through this will attest I'm sure. 

Last night was crushing, ribs felt popping out through my skin, and the elephants were running many marathons, while the army of charlie horses were racing in my legs, my veins were pinching and releasing, my spine as usual wants to pop out. 

It is also tough to deal with this emotionally. Usually I try to be very very strong, but it was overwhelming - and I had tears. This then turns into self-hate, and very dark thoughts. 

It's all frightening.

I am so very lucky to have friends that are taking care of me, as caregivers, best of friends and who offer to help ride through it together. They help me to laugh, love and live, and through this darkness, I am the luckiest girl in the world to have such a strong circle of support, and I can't say thank you enough.

I know I wouldn't be here now without you that have kept me going.

Thank you for reading, sharing, supporting in this battle that is the hardest thing I have ever had to endure, every minute of every day.

Love and many many thank yous.

Thursday, January 6, 2011

I still got it

Why is it I always have adventures? I love that I do and perhaps since my Mom took me 'adventure walks' since I was but 3 years old, it's in my blood.

I am on a plane with about an hour to go to San Diego. My carry-on is filled with 3 books - all different, a few snacks and my nano which has 136 unlistened to podcasts despite the thousands of songs of which I'm blasting my earballs with right now. 

My adventures of the day should have been at first in the airport - no line though so straight through security and customs who questioned why I was going for so long, why I was staying with friends and he should have laughed when my reason was "ditching winter". 

I went right to the gate, but I was ansy. I couldn't read or listen to anything, my eyes darting everywhere to everyone. Why do people take babies to Disney when they have no other children with them?

The adventures started then. A harsh but nice woman rolled me to a new gate with no explanation - I had to ask, "The gate has changed due to the delay in the flight to Philly. We'll bring you up the stairs to the plane.


My eyes started to water despite my rockstar self. Then not just tears, but crying. Not Oprah-Ugly-Cry, but lots of tears. Another attendent brought me through an underground maze to an outside door where there was an aisle seat. I needed help to be transferred and strapped in so much. I had no coat or gloves. They brought me to the tarmac, and I cried again. Two large men lifted me up the stairs on a 1,2,3 lift for each step. I'm not a crier, why am I so weak? Pain, right. They were very kind and gentle though, all things considered. I can't complain at all, this was no Newark and no Continental. I managed to get to my seat with them just watching. It was a small commuter place with just 28 people and was smooth as glass.

Of course I was to be the last off the plane but there was no assistant despite the call for one 100 miles out. The pilot came to me an apologized. He was a kind man with a voice that was so comforting and very warm eyes. He offered to take me to my next gate which was a good 20 minute walk and another terminal but luckily I didn't have to redo security. He asked me what happened that I was in the chair. "Shit", he said. I was thankful for no pity, or various "I'm sorries". By now he was pushing me with one hand, so he could walk beside me. This was surprising and meant so much. He did say that "I didn't look sick, but great and positive". Thank you, I have my days for sure. Double checked the gate for me and had me use the washroom before he let me go. 

Pilot Mike, thank you or taking life and mine so seriously, you are an angel. 

Gate 14 had a bar. Not just a bar but one on the walkway with just 8 seats. I was able to get up on the stool and a pinot grigio. 

I met a bartender that taught me the spanish word for shutup as she told a collegue. I met an oil mogul that is American but mostly works all over Canada. I met a nice guy coming from San Diego to Minneapolis and talked hockey. The new bartender was a blast and took great joy in asking everyone to flash....their I.D.s. I saw my gate boarding about an hour early, but it was to San Fransisco. The bartender left his post and checked the monitor for me, my gate was changed. I would have only had to go 8 steps, now to a gate 7 gates away. I haven't walked that much yet, let alone with the chair. He gently touched my shoulder and said "you can do this, I have faith in you." He stayed in the walkway to watch me make the new gate. 

I was boarded right away...

The office is on the airplane TV, it's funnier without the sound.

(I made it safe and sound, I've had my first night in San Diego, and I feel okay, super sore and very tired, but all things considered, okay). 

Thank you for the continued support, pushing that little button to the right and the comments and ongoing love. It is this that help me be able to get through the days and continue to have adventures. <3