Friday 26 October 2012

FOUND


Found

I have been trying to understand the phycology of it all. Why we allow other human beings to bring us in the dark hen we are striving to live in the light.  Why we allow them to fill us with so much anger, so much darkness and sadness. Why we allow their opinions and close minded statements to rob us of the joy we seek to have in our lives. Last night was one of the worst nights I have had in a very long time. But what hurts you yesterday makes you stronger today, and this is what I have gained.

I’ve learned over the past year that no matter how one choses to live his or her life, there will always be people who do not agree with what they are doing. There will always be those who think they can do it better. There will always those who feel that if we lived by their ways and their rules that our lives would be better; more fulfilled. But since when did anyone have the right to tell us that what we are doing isn’t good enough? And since when did we allow others to dictate what is right and what is wrong. For what is right and what is wrong varies for each person. But I am not willing to waist all of the efforts that I have put in to ensure my happiness with myself and my being with Perry, to let a few people who are ignorant to cause me pain and upset when really they don’t care.

I got an e-mail last night from someone from my past, whom I want to remain nameless as I fear someone will want to kill them after reading this. She has been reading these blogs and felt the need to tell me that I am a ‘self-centered, ego maniac who feeds off attention from others.’ Someone who ‘doesn’t deserve a second chance at life because you have messed up the first one’. She felt that it was important to ‘bring me down a few notches’ and open my eyes to reality and inform me that I need to start appreciating the things I have.

I cried for an hour upon reading this.

That combined with an argument with a guy about a stupid Facebook status that I had that he over analyzed and made me feel like a piece of shit, combined with stress and not knowing how to deal with my emotions about transplant lately and then top it all off exhaustion from trying to keep up the pace at work while dealing with weak lungs. Needless to say, especially after last night’s blog post, I snapped.

I don’t know what it is that makes me so sad when someone says something to me. I don’t know if it is from being abused by y alcoholic father as a child, not sure if it is from being bullied at school, not sure if it was from all the brain washing I experienced when I was a Jehovah’s Witness and maybe I was afraid that some of that was creeping back in to my life somehow, but I do know that it triggers something very evil in me, and I don’t like it. I don’t like handing over that kind of power to people, the kind of power that has destructive forces and can cause a lot of damage to my soul, and has done so. Last night I actually allowed myself to question whether or not I was a good person. Made me question whether or not I deserve a lung transplant. Made me question whether or not I deserve to have Perry’s love in my life. I allowed that to happen.

I have preached on here time and time again that life is all about attitude. And how we react to things, yet last night my ability to control that aspect of life simply vanished. I was brought right down to the pit where all I wanted to do was scrape some dirt in on top of me until I could no longer breathe. But I allowed this to happen.

I have learned from talking to my shrink and my social worker that jealousy is a root of a lot of evil in this world. A lot of people have a hard time seeing good things happen to others, especially when their own lives aren’t so peachy. They tend to pick on the imperfections in someone else’s life rather than face their own demons. I have a lot of attention around me right now and a lot of positive energy, very positive, and a lot of people just can’t deal with nor accept that. They need a little bit of that energy themselves and feel the need and simply insist on trying to rob some joy from others by saying or doing something that they know will hurt someone else. BUT. It can only hurt us if we allow it too.

We have two choices when confronted with negativity; we can either react or we can ignore. Sure the imperfect human in each of us leans towards the first, react. Who of us wants to be hurt or saddened by someone else’s actions or comments, so naturally our instinct is to either put our claws out and attack back, or ball up into a corner and throw a huge ass pity party. BUT! What about if we didn’t react at all? What about if I learned to not give, or allow the other person to have so much power over me that I chose to say, “NO!. I am not going to let this bother me!” By choosing the later we not only send a message to our attacker that they have no power over us and cannot bring us down from the glorious clouds in which we are so happily residing, but it also strengthens us for future blows, to make us stronger in dealing with more assholes that will come our way.

All I know is I hate feeling as low as I did last night. But I also know who I am deep down inside and I know that I don’t deserve to give these people my time and energy when I have SOOOOOOOO much positivity surrounding me on a daily basis. Why is it that we so quickly focus on the darkness when there is so much light? All I know is I am going to try and make sure that never happens again. I know that I am a good person at heart. I see it through the miracles that I have witnessed in my life, Perry being one of them. We have so much love between us, it’s remarkable and makes me believe in ‘meant to be’s’. We have so much positive things to look forward to as well, like our wedding day is approaching and there is so much planning and good things to come. We have the most amazing friends around us who make us feel so much love even though some of them have to love us from afar. And above all, we have the gift of Today! Another day to enjoy on this beautiful earth that God has been so kind to give us. It’s true what they say, today is a present, because it is a gift from above.

So the next time some idiot who thinks they know it all tries to rain on your parade and make you feel like your bellow insects on the totem pole, just ask yourself; “Am I going to allow them to bring me down? Or, am I gonna show them who’s in charge of my own life and say NO, you can’t hurt me!” Because that’s what I’m sure as hell gonna do!

 “Put your ear down close to your soul and listen hard.”

~ Anne Sexton

Peace and Love,
Jamie Leigh Francis
xo

Thursday 25 October 2012

LOST

LOST

I’m finding lately it’s getting harder and harder to wear my ‘mask’ of someone who is doing so well, yet inside I am falling apart. I’m really starting to question my purpose here, and I’m finding myself confused about what I thought was reality, turning out to be not so real.

At my place of work, the owners allowed for a jar to be placed at the front counter for “Jamie’s Journey”, for my transplant, an extra way to raise some money. A lot of my customers are surprised when they learn that the Jamie talked about in the short paragraph attached to the bottle is actually me. They see what appears to be a well-kept, healthy young man. It’s the most frustrating thing about having this disease, is that people just don’t understand how not well I actually am. Sometimes I wish there was a hidden camera in my home so that people have to see what I have to go through just to go out and face the world on a daily basis. Not because I want attention, but beg for compassion. When you are operating on less than half of your lungs, it makes daily living, the simplest of tasks to be like climbing Mount Everest.

I am so grateful thought to be able to push myself right now. By rights I should be home resting, and taking care of my health to ensure that nothing happens before it needs to. But I find pushing myself that extra bit helps me stay real and focused. It also helps me emotionally, being able to go out and mingle with people. Being able to provide good service to people in a restaurant brings me a measure of joy and happiness. Makes me feel like I am needed somewhere. But I do get tired of always having to pretend. Sometimes I just feel like lying on the floor and giving up just to make people realize how much this sucks sometimes. I hate to sound down in the dumps, because I am usually so positive, but sometimes you need to just vent.

On this blog, I seem like such a positive guy, who has his shit together, but to be honest sometimes I just feel like I am about to fall apart. This past few months has made me question everything. Who I am….Why am I here….and Why certain things happen the way they do? I don’t have a lot of time to wait for the answers and sometimes I get so impatient that I just want to know NOW! I am questioning whether or not I am a good person. People have said and done some pretty cruel things to me over the past little while and I am wondering if I deserve it. Am I missing something? I thought people who claimed to love you would be there despite whatever. Is love losing its meaning? Is love something that people can no longer hold sacred and commit to? Because when I say I love you to someone, it means that I am willing to accept their flaws and help make them a better person. Not kick them in the head and spit on them when they are on the ground. I’m confused in my own mind how people tell me on Facebook time and time again how much of an inspiration I am to them, yet, I get people inboxing me and telling me, and saying the most inhuman things that I question whether or not I deserve. Again, I come across as this guy who got it all figured out, but lately, I feel like I know nothing anymore. I am trying my best to be a decent human being and I just feel that lately some people would rather see me dead than to just show some compassion, and even if they cannot do that, I would just like to be left alone. And things that you want to say, if they aren’t positive than please, I beg you, just keep them to yourself. I’m trying so hard to just stay strong and keep my spirits up knowing the days ahead are going to be hard, but sometimes I question why I even bother. If so many people out there think I am a  bad person, then should I really be asking people to help me to save my own life. Or is it best to let nature take its course. Am I not worthy of an extended time here on this planet?

Lady GaGa said how would she not appreciate her fans if she didn’t have h8ers? And I see her point. And I want you all to know that I do appreciate so much your love and support. From those of you who build me up with kind words and say the sweetest things to me, thank-you from the bottom of my heart. It’s just that lately I’m overwhelmed with people saying just the cruelest things to me. And unfortunately because I am human, sometimes the little bit of bad outweighs all the good.

I just want to be a respected person, someone whom people will say after I am gone; “Jamie was such a sweet guy, someone who will be missed”, but lately I just don’t know.

It’s so hard holding all your emotions in; wondering if tomorrow will be there day your lungs decide to fail, if tomorrow you will be faced with death, if tomorrow you will have the strength to wake up. And just this extra garbage, is sometimes a little bit too much to bare. All I know is that I am just being me, and if that’s not good enough then I don’t know what else to do.

For now, I’m off to bed….. maybe rest will help me think more clearly…..

Peace and Love,
Jamie




Tuesday 16 October 2012

HIGH expectations; BIG disappointments


HIGH expectations; BIG disappointments

When you live with a terminal illness such as Cystic Fibrosis, from a young age you develop this mind set of how life is supposed to go. How people are supposed to treat you and how they should be expected to show a measure of compassion, because after all, you are a sick person. You expect because you are ill, people would be careful as to not hurt you, or cause you any more anxiety because of what you are already facing in your troubled life. Turns out, none of it really matters.

Just because I am sick, does not give me the right to expect people to treat me a certain way. With that said, I have been the beneficiary of some extreme compassion and love shown to me by people all across this nation and abroad. But I am finding it very difficult what a “friend” behaves in a way that I feel he or she should not behave, because I expect better. We so quickly forget that they too have limitations and that they have things going on in their lives that I may know nothing about, or things that are causing them to be limited in the way they can express fellow feeling to others.

When this whole transplant thing started over 8 months ago now, I never thought I would lose friends, or even family for that matter because of the ins and outs of dealing with this kind of traumatic thing I will have to face in the near future. I just expected that everyone would be there, come hell or high water – they would be there. But that is not the case today. There are certain people in both of our lives that we never thought we would lose during going through such an experience as this. But the only reason why we were surprised is because we expected them to be here through everything. Had we not set that expectation in our head, we would not feel so sad about it. Many people are capable of different things; a lot of people can’t handle to emotions involved with something like this.

It’s also important to note that we cannot have expectations of others until we analyze what other people expect of us. That would be hypocritical. Often times, especially lately, I’m finding it better to just not have any expectations of anyone, that way I don’t end up sad and upset. At one of the latest fundraisers I had, someone asked me if I was disappointed with the turn out, I said ‘no’. Because I never had any expectation walking in there, therefore whoever came I appreciated and those who didn’t I tried to tell myself that they must not have been able to attend and that was that. If I expected 250 people, and 50 people showed up, can you imagine how disappointed I would have been, therefore NO expectations means NO disappointments.

Not having high expectations in life also leads to a contentment that cannot be expressed with words. It gives you a confidence in knowing that those who are in your life are meant to be there and those who are no longer present, really weren’t meant to leave a mark on your life. It allows you to expand on the relationships you have knowing that they are genuine and that the other party has your best interests at heart. This day and age people use to term ‘best friend’ way to loosely. They say “OMG, she’s like my BEST FRIEND” and then 5 minutes later that same person will say the same thing about someone else! Isn’t that putting a lot of expectations on an awful lot of people? What is a best friend? It is someone who understands you as you are, accepts your limitations and flaws but still loves you anyway. I’m sure not every person in your life is THAT person.

It’s also important not to place too many expectations on ourselves. I always expect myself to be so strong, like a superhero to others. Not let them know that at times I cry myself to sleep because I am so scared of what’s about to unfold. How I scream out the lyrics to really sad songs to help me deal with the downfalls in life. How I literally have to tell my mind to stay awake when I am in the middle of a coughing fit because I don’t want to pass out or have to sit down in front of others because maybe then they would see just how fragile I really am. I have CF, and sometimes I forget that. I think I need to be superman all the time and not have moments of weakness to remind me of reality. And it’s tiresome sometimes to always be so strong. People tell me all the time that they would never have guessed that I have CF just by looking at me. The reality is that we as human beings are only capable of so much even if we don’t have a terminal illness. And it’s very important that we realize that, or else we will burn ourselves out and be useless not only to others but even ourselves.

The part that I hate is that I EXPECT Perry to know what’s on my mind at all times, and I often close down in front of him because I don’t want him to be burdened any more than he already has. He has entered my life and has fixed so many things and has healed me in ways that no doctor ever could. But yet, I sometimes forget that he is only human too. And to take on someone who has a health condition such as mine if something to be awarded in itself, yet he seeks no honor for his role. He is just happy to be able to be here for me and has promised to be by my side through all of this come hell or high water. But even he has limitations and sometimes I forget that I may be exhausting him with everything going on in my life and in my mind and the needs of my body when it comes to him helping me with my therapies. Communication is so important in a relationship and I am so grateful to have that with him. He not only hears me but he listens and I try to do the same. We have little tiffs here and there but never have we had a heated argument. And the reason why things are going so well is because I have no expectations of him. He has graciously and willingly entered my life and has vowed form day one to not go anyway and stay with me, even if that means holding me in his arms as I take my last breath.

He is my hero.


This life is such a beautiful journey, is it not? And we are all learning. I hope that this made sense to you….. it has helped me a lot!

“Blessed is he who expects nothing, for he shall never be disappointed”
 ~ Alexander Pope


Peace and Love,
Jamie Leigh Francis
xo

Monday 15 October 2012

Saturday 13 October 2012

Toronto Visit/ Update


Perry and I outside the Toronto General Hospital
Toronto Visit/ Update

Whenever you go to the store and buy anything with dairy in it, it usually comes with an expire or best before date. I travelled to Toronto in hopes that the team there would be able to give me my expire date so that I would have an idea of how much time I have left here on this planet, but unfortunately, I forgot they weren’t God and that they were not able to supply that information.

It was a week of so much emotion. I was scared, excited, worried, stressed and anxious all wrapped in one tiny little package. It’s not every day you meet with doctors who will eventually have control over your life. Perry and I tried desperately to make a vacation out of it but the trip was so exhausting emotionally it was hard to enjoy ourselves, but we did manage well. Toronto is a beautiful but extremely busy city; it’s almost as if you are in another world. We were up bright and early on Friday morning to head downtown Toronto to meet with the team at the Toronto General Hospital. The hospital was HUGE! After registration, I headed right up to the 10th floor to get my pulmonary function tests done. This is a test that measures how much of your lungs are actually still working in good order. At this hospital they do a more intense test than in St. John’s, and I was exhausted by the time it was all over thirty minutes later. However I quickly regained momentum when they told me my lung volumes were at 44%. You have to understand that when I was hospitalized in February, I was told upon my discharge that my numbers may increase a little but nothing significant. They were 31% at that time, and you are listed for transplant at 30%. So to be told that they have increased to 44%,14% away from the ‘danger zone’, it’s a pretty emotionally thing to hear. I spent so much time before we left to visit that I only had a limited time left, and now to hear this great news was overwhelming.

After this test, it was up to the 12th floor to get a 6 minute walk test done. This measures just how well you can perform while exercising, and how well you can perform in daily living to help asses my quality of life. Before I even started this test I found out that I gained yet another 5lbs of muscle mass, which in the long run helps my overall health. The walk test was challenging and you have to give it your all. It helps the doctors see your peak performance and can judge how well you are doing. It went well. My numbers were slightly down but very good for someone only using 44% of his lungs.

So now that my preliminary tests were done, it was off to meet Dr. Lianne Singer. She will be my specialist that will work side by side with the surgeons to determine when my transplant will benefit me more than the risks of the surgery will. I am so glad I had a posy of people there with Perry and I for support. My aunt Linda whom we stayed with, my cousin Elise, and a dear friend of ours, Michelle joined us. Dr. Singer is a lovely lady. She’s about early 40’s, slim with a beautiful, calming smile. She entered the room and wanted to meet everyone who was there. I think she was really impressed that I had so many people with me to hear the news and could see just how much support I have in this. It was a small scale perspective of just how many people I have behind me going through this journey. I couldn’t help but feel the presence of so many in that room with me, more than the room would ever be able to hold.

Dr. Singer explained to us that I am a very complicated case. Not only do I have CF, but I have this NTM on top of it all. This type of NTM can cause all kinds of problems. I think she was surprised that I was doing as well as I am. As I mentioned, she’s not God but she was able to give me some idea of a timeframe. To her knowledge I was safe for at least a year, and the maximum time she felt I have is 5 years. However, I have already defied the odds so she couldn’t guarantee that this was the limit. But to her knowledge it would be a year for sure before I would need a transplant. She did make it clear that this is just her best estimate, and that this type of infection cannot be cured and could choose to act up and cause havoc at any time. But right now my numbers have been hovering around 40% since April which is a good sign that it may stay stable for a while.

Then she talked to us a little bit about the surgery and the risks involved. I was told that about 95% of ALL transplant patients make it out of the surgery, and that given my age and physical shape, she had high hopes for me post-transplant. Right now there haven’t been many studies to support long term success of transplant because lung transplant has really improved over the last 10 years. She said that there was a 50% chance of surviving 5 years post-transplant and that most patients only get 5-8 years out of their new lungs before a second transplant may be needed but is highly dangerous and unlikely to occur. That was a little hard to hear, but this statistic is based on the entire transplant society, which means if a 70 year old man gets a transplant and is in not great physical shape and dies after a year, then this is put into this statistic as well. CF patients have the best success rate with transplant she told us and really didn’t see any reason why I couldn’t get 10+ years out of my new lungs.

She was thrilled when we told her that we have started fundraising and she said herself that the financial part of it all tends to bring the most stress to transplant patients, especially when you don’t live in Toronto. The less stress the better she emphasized.

She wants to see me for a follow up in six months, and other than that she just said to keep doing what I am doing because it is obviously working! She shook our hands and wished me with best of luck.

Dr. Singer was able to schedule an appointment with an NTM specialist for Wednesday morning, for us to visit and talk with him and get more information about the particular bug that is growing in my lungs. Unfortunately he did not have all my records in time for the appointment, so we just had a chat about the drugs I was on and he told me that he would talk to my team in St. John’s and advise them on his recommendations and would contact me to let me know his findings. He was a little worried about my liver, but was very pleased to hear that I was handling Biaxin well, which is one of the drugs I am taking that a lot of people have problems with. I am lucky!

Right now my focus is to continue to live my life to the fullest and take care of myself as best as possible. I am looking forward to continuing fundraising and plan events where I can be with the people who mean the most to me. Most of all I am looking forward to planning a wedding, where I will marry the man of my dreams. I give Perry 100% of the credit for my good, stable health, as his love has given me a genuine reason to live and continue to fight this stupid disease! His love is saving my life!

Thank you once again for all your love and support and well wished this past couple weeks. It’s been emotional but the news couldn’t have been better really.  Looks like you are all going to have to put up with me for a while yet.

Love your life to the fullest and don’t settle until you find absolute happiness.
You deserve it.

“To enjoy good health, to bring true happiness to one's family, to bring peace to all, one must first discipline and control one's own mind. If a man can control his mind he can find the way to Enlightenment, and all wisdom and virtue will naturally come to him.”
~ Buddah


Peace and Love,
Jamie Leigh Francis
xo