I have always been a water baby. When I was little my apartment building had a pool, my favourite days were the ones where I'd go rollerskating, then swimming, drying off in the sun with my one pop I was allowed to have a year, Mountain Dew. I'd be well past wrinkly in the pool.
Being physical is very important to me, and as growing up as a dancer, pushing my limits, applied in every part of my life. I pushed hard, and I loved it.
Now I have had to relearn how to do most normal-people things, and as I've outlined the pain is really awful. However, I need to look at things differently, and be happy for what I can do not what I can't. It's how I looked at judging dance - I want to see what the dancers CAN do, not what they can't.
It's hard to put myself in that frame of mind, or think something other than I am a constant failure.
To look at it, I can't walk on my own without help from someone or something, and using the wheelchair is really hard to get my head around. However, I am doing physio as much as I can, and learning how to adapt it. Hell, 850 abs in there isn't so bad I suppose, right?
I've discovered the magic of water again. The pain is minimal (which is still high and bad) but I can do some of the physio in the pool. I can also do things that I haven't had the strength to do - I can do full splits again, I can arabesque, I can work my arms and pull my legs in fans - double circles aductor and abductors.
I'm so free in the water, I can do anything. It is wonderful to feel something that I thought I couldn't do again. Even if my shoulder blades look funny.
I'm a water goddess, and I love it. I still have the tenacity and driving spirit that I was born with.
Someone you know has lupus. You know me. I can use a snuggle and hugs.
I'm going through some really terrible new things - again. It's getting very hard to keep my head up of the water. But you know me by know, I talk facts and my experience.
Today is Lupus Advocacy Day. I need to write more, but hence lupus is hindering even that right now, I hope that you can share, and spread the word.
This is still an unknown disease but it's very brutal. Please if you love us, spread the word, link to blogs like this one that details my daily struggle.
It is horrible, and not just a 'daily struggle'.
It is scary. I am so happy though to have people around me that are so supportive, and love and help in the bad - really really bad days, like the past while.
Someone you know has lupus. Please feel free to look at my past blogs, and my experience. Then possibly look at the others out there, since it is the disease of a million faces. We don't (often) look sick but we are. Very very sick.
A cuddle, hug, sharing, understanding means so much. Thank you for helping to share.
More info is here on today's advocacy day -
Love Beats Hate
There is alot that I am dealing with for hate, but let's do love.
I love the weather in SoCal, I love that I feel so comfy here. I love that I have friends that are willing to take me on to get me out of winter in Canada.
I love my family and friends, yes, blood isn't thicker than water.
Love beats hate...
yes it does. Love needs to beat hate. Too many people enjoy being negative, perhaps for a reason to feel better about themselves? I know schoolyard games, but it continues with people in family and workplace. It is rediculous.
Yes I have lost people in my life due to my illness, maybe not but the excuses are always because I am sick. Scapegoat or cowards.
Thank you to those that continue to read, you prove that love beats hate.
Thank you for those that support me in your words and silly pctures.
Love Beats Hate. We need to spread this around.
Love. Beats. Hate. Just do it.
Many times I have heard that my decision for not going on medicine means that I am giving up. If I was truly giving up, I wouldn't be here today. I would not have fought to make it out of 2009.
The reason I am not on meds is many fold. I cannot tolerate anything, Nsaids, opiates, antibiotics even have disasterous effects on me. I tend to have severe reactions and side-effects. I cannot risk this, especially as I don't have any means or income to pay for these meds, so to put money that I do not have on something that will make me worse in effects is not something I am willing to do.
Despite that I am unable to drive or work, I have also heard 'why don't you just try it since you aren't doing anything now'. Thank you. I don't feel useless enough. Why not become a living zombie since I don't contribute a damn thing to society. Why prolong living like a vegetable and just wait for death?
I took so much pride in being independent, and I have such little of it left, I will not have my mind atrophy as my body is.
Would I love to be on meds so I can try to 'live'? Of course I do. My reasons and means don't allow for it. So I live as I am failing inside. It is such terrible pain that never lets up. Chronic means always there, and it is scary. Again if I am happy or laughing it doesn't mean I am without pain. This is the worst thing I have ever been through and I have always been a tough cookie. I try very hard not to complain, even in the worst of it. I cry, alot.
I am not willing to go through worse effects of meds that don't directly treat what I am dealing with. I can only hope the new med - first one for lupus will be approved soon, and then I will see if I can even take that, and figure out how to pay for it. So far it is over $20k a year - and no insurance nor income will make this difficult.
I am not giving up or giving in. I would not still be here if I did.
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.
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 ( http://www.mayoclinic.com/health/costochondritis/DS00626 ) 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.
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.
SHIT.
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
