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.

Not Giving In

 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.








 

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.

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 ( 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.

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.

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

Christmas has always been magical my whole life. There is something peaceful and joyous about the time, special and happy. It's not about gifts, but it's about the time, basking in the lights of the tree, the music - the more rediculous and fun the better and Christmas Eve is my favourite over Christmas Day, possibly because that means it's almost over. Yes, I have mistletoe tattooed as a tramp stamp. I had to do that.

This year means so much more to me. 

Last Christmas I don't remember at all. I do remember that I couldn't do anything for myself, I had to stop working so suddenly. It has been a year since I've worked, gone grocery shopping, checked my mail, cooked, drove my car. It was a very scary time. I remember feelings, but not events. If I think about it too much it really is very surreal.

I was not expected to make it, let alone to make it now, a full year later. My PT also didn't think I could make it when he first met me.

I've had to relearn how to do so much, eat, swallow, hold things, and there are still so much that I cannot do. I still can't drive, work, check my mail, but I can eat once or twice a day, I am continuing to adapt and learn how to adjust to do everything and everything. I am slowly getting stronger. 


I'm not sure how I did this, how I came back to life, how I continue to fight, yes, I can't do much of anything, and the constant insane pain never goes away - but somehow, I keep waking up despite it all.


My love and sincere thank you goes out to my family that is taking such good care of me, and my friends south that take care of me for the winter. You have brought me back, you have made it be 'okay' even though I am so so sick. And a thank you to all my friends that are in my life everyday, make me laugh, be silly and have reason to not wilt away. Thank you for the donations, honestly that has been helping pay for what I can't manage to do medically. 


As tough as this is, and it is daily hell, I have so much to be thankful for.  Thank you all for being there, and making light out of the darkness. 


I have no idea what will happen, but I hope as I continue to get stronger, and continue to keep fighting to stick around this joint as long as possible. I don't wish my past year on anyone. 


I'm here to make new memories to make up for the scary ones last year.

Merry Christmas and happy holidays know matter what this season means to you. It means love to me.

 

I'm Broken, Yet Still Me.

In the same topic as yesterday's post, the following are points that are helpful for those of us dealing with chronic illness. The points are sourced by Author Unknown, but I have seen it on many sites. I have decided to add my own points under, as I have in the previous post. As always, comments and thoughts are welcome. All I know is my experience.

1.   Remember that being sick doesn't mean that person is not still a human being.

This I do struggle with often. I am so dependent on others that it is hard to think that I have an opinion, and I am guilty of not treating myself as someone that matters. Being out in the chair, people look at me, and I am still working on what kind of etiquette I am comfortable with. I appreciate being spoken to, but please try not to help by grabbing the chair unless you ask, it's just so much pain. Because I am in a chair doesn't equate to having no feeling in my body, it's quite the opposite. I do still have a working mind - usually - and yes sometimes I have to say "I need you to think for me". I'm still me even though I am broken.

2.  Recognize the difference between "happy" and "healthy".
As mentioned in the last post, I'm not healthy, but I make efforts to try to do things, that make me happy. Laughing, music, friends, people that I care about and really care about me, that know me for me, and not just my illness. Many people I have lost, but others I am close to only have known me ill, but I'm still able to be happy. It doesn't take the pain away, but it helps my soul.  
  
3.  Understand that being able to stand up for ten minutes doesn't necessarily mean they can stand up for twenty minutes, or an hour.
This is something that was very hard to grasp. I was frustrated at being able to do something, then not. I cannot stand for 10 minutes consistently, and if I walk without holding onto the wall once, that is about my limit. I can stretch one day, but not after. Sometimes I have to sit while I brush my teeth, sometimes I have a hard time holding the toothbrush. There is no predictions to this, and it does require patience, including from myself. Sometimes I have forgotten how to turn on the car, others I couldn't figure out how to open the door. It's cruel, but it happens. 

 4.  Repeat the above step substituting, "sitting", "walking", "thinking", "concentrating",  "being sociable" and so on, it applies to everything.

 5. Realize that chronic pain is variable. 

6.  Know that "getting out and doing things" does not make the pain vanish and can often make it seriously worse.
Sadly true. However it helps my soul. I love when people offer to come over, it helps me be home, and is so kind for people to ask to come visit, or to help out a little bit. I love love love going out, but it's just not possible without a to-do. Going out other than to a doctor's or a hospital is wonderful and I love it, but also I have a fear or placing more burdens on people and it is taxing on the body. Luckily I have time that I have to to spend back home, in bed. It's a fine line and again hard to not just be able to go out, forget doing things.   

7. Understand that if they say they have to sit down, lie down, stay in bed, or take these pills now, that probably means that they do have to do it right now, it can't be put off or forgotten just because they happen to be somewhere, or they're right in the middle of doing something.
 When I hit the wall, I hit it hard. I get no warning, no migraine-like auras, it's horrible, then BOOM. Shutting down happens and I'm done. I tend to try to push it, and I know I shouldn't.

8. Don't suggest cures. I do appreciate the suggestions, but often I have done research and if I could try something I would. Usually if I haven't, there is already a reason in place, due to costs, side-effects, and I cannot take standard pharma meds. I have alot of limitations. Sure, if I could take 42 pills a day and manage 'fine', yes I probably would do so. There is a reason, please ask if I have heard of something, like the new 'miracle' Benlysta, but again, there is a reason why I can't. I'm not just being difficult.

9. Don't be put off if they seem touchy.
Pain hurts. Imagine how you feel with a headache or a flu, miserable right? I am not comparing my everyday pain to a headache or a flu, but it's the closest thing I can try to compare to. Sick, pain, miserable, frustrated...it's all serious. I do try to mask it, not bitch about it, the fact is - I am in a very severe part of the sickness, it's quite alot more advanced and happened very fast with me. Sometimes I can't get enough snuggling, sometimes, the slightest touch sends me to screaming and tears. I have no way of knowing. It just hurts - all the time. There is zero break, and zero times do I ever be pain free.

10. Be helpful.
And thank you for that. As I've said, I need help with very simple things. I want to do everything for myself, but I can't. It's very humbling and a loss of alot of dignity. Thank you for being patient and helpful, I cannot do the big deals like taking myself to the doctor. Any little bits of help, and that includes asking how I am REALLY doing, if you don't want to hear, don't ask. I am not one to bitch about it much. Yes it's overwhelming, and I want to help you, I want to help you as I used to do. I want to be independent, and more than anything, I don't want to leave it to others. I just can't.

Thank you as always, for reading, sharing and I hope there might be some gems in here to help. I'm still me, I'm just broken. It is hard to stay positive, I try my best. Feel free to ask me anything, it is a very hard and confusing struggle for everyone involved. Thank you for taking care, and being still kind to me. It helps me stay strong and try to fight.