Friday, January 27, 2012

To be Brave

Brave: Possessing or displaying courage or to be Valiant.

Before I start to write today I would like to share a couple quotes I came across.

"Courage is not the absence of fear, but rather the judgement that something else is more important than fear". Ambrose Redmoon

"Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow".
Mary Anne Radmacher

 Today a client came to see me at work. I have not seen her in some time. I was surprised when the first thing out her mouth was her asking how I was doing.It's not a bad thing but most people don't ask or take the time to ask how we are doing. I have not seen her since quite some time before Xmas. I told her how I'd been doing and she just kept saying you are so very brave. I told her I am just doing what I need to do. Seems to me I now just go with the flow. At times I do not feel brave but, scared. It honestly depends on where my mind is at. She said bravery comes in different forms. The more I got to thinking about it I agreed. In my daily life I am not brave but in my arthritis life I am brave. Isn't it interesting how I can have two different sides. When it comes to everyday life I feel I lack the zest and bravery but when it comes to dealing with my health something else kicks into gear and I become somewhat fearless. Give me a new drug I'll do it, give me a new activity I'll try it. If it means getting better and fighting my battle then count me in. I only wish I was as fearless in my everyday life. How is this possible? So when my client was telling me she thought I was tough, brave, and such a great inspiration my heart disagreed somewhat. Isn't it interesting what life throws at us but today I decided to be a little more aware and be a little bit braver in my everyday life. I bet if a physiologist was to read this post they would say it goes deep then me just having two different sides. Now that would be an interesting conversation. The difference is now I am a little more aware of the fact that I need to boost up my day to day living a bit more and be a little braver.

Friday, January 20, 2012

The river.....

Seems fitting today that I write something that I wrote on my iPhone while sitting in the doctors office a couple weeks ago. I stumble across it and thought it was worth sharing what I wrote. So here it is an unfinished note I wrote myself in hopes to share this I think.......I stumble across it last night and well here it is.

Someone mentioned to me in a comment something that has stuck in my head lately. Imagine that you are floating down a river and just allowing the water to carry you, moving you gently and swaying you from one side to another. It just sounds so nice to me. It could be because I love water and maybe this is why I feel so close to that statement. I can tell you this much I have been throw a whorl wind and I am only at the beginning of my journey. Today I am sitting in the doctors office and I see a lady with a walker. It makes me feel sad and then I feel sorry for myself why is this?? is it because I fear for my I scared? I am unsure. So instead of turning to these  negative thoughts into more I choose to write on my iPhone. God I want to feel better, I am tired of being sick. Something about the Doctors office puts a dark cloud over my head. All I want to imagine right now is floating down the river. ....................I guess at this point I got called into the office because it was unfinished.

This is all I wrote this day. It was on December 29th just after being sick for almost 2 months. Clearly not one of my great days but I do recall having a good rest of the day. This week I had an appointment at my specialist and all I can tell you is I was frustrated. I clearly was not thinking about the flowing river this day. lt was the first time in a long time that I was invisible. I just felt like the doctor did not answer my questions at all BUT before my appointment I met a wonderful girl named Jane in the office. She is a year younger then me and she had her beautiful daughter with her. Jane and I got to chatting and it turns out we were both diagnosed the same time, and at the same age. I asked her alot about her pregnancy and how it was for her, and how she was feeling. I was so glad to hear she did wonderful. She said she went into a remission while she was pregnant and felt wonderful. I have read that during pregnancy RA and AS symptoms seem to vanish for a bit. All the arthritis symptoms came right back after her pregnancy was over.  The only catch was during her pregnancy her body built up antibodies and she was not able to go back on her remicade. Remicade is another drug used to treat arthritis. So now she is on what I am on which is Humira but having major complications. Her hair is falling out, and skin is patchy, sick all the time. I felt horrible for her. When I was talking to her she was trying so hard not to cry. She showed me her patches of hair loss, and showed me her eye brows and explained what they are now doing to help her. She now for the past year has been doing injections into her scalp and face to get the hair growth back. She clearly has been through alot. Her daughter is so full of life and happy and she said she now is on a mission to get healthy for her. My heart just sank. After she got up tp go into the room I thought to myself is it worth all this really worth it? The drugs, the appointment's, the frustrations. The answer is yes.......Yes it is all worth it. The thing we must remember is there is always someone who needs more. In this case "Jane" has overcome obstacles and she still is smiling. Her obstacles have been ten times harder then mine. There is always someone who's story goes a little deeper then our own. The way she played, looked , laughed with her daughter was amazing. In her daughters eyes it's just mom. Her daughter has not learned why they come to the office every month. Jane still smiles, laughs and after painful injections walks out of the room and smiles at the sight of her daughter playing. Jane gets her strength threw her daughter. The only good thing that came from my appointment was meeting Jane, it was a reminder of how lucky I am. It was humbling to see how strong she was. I did not look at her and feel sorry for her or myself or feel worried for my future but better yet I felt inspired. I think maybe now looking at it the reason my appointment was not the greatest is because it was more about just meeting Jane this day.

Arthriris to me is like a raging  river at times rough, dangerous, and scary but eventually if you find your right frame of mind it becomes a calm stream and if you can get through the scary parts, frustrating parts, and upsetting parts you then can imagine yourself floating down a river just going with the flow and allowing it to take you on a journey swaying side to side.........just allowing the river to carry you, you may find some calm along the way. This day Jane was my calm.

Monday, January 16, 2012

Helping others makes me forget about my issues

Yesterday was a great day. I spent the morning with my sister and my beautiful nephew Caelan. We ended up going to this community center to attend the open gym session for kids. It was so much fun. It confirmed for me how much I want to have children. I just feel truly happy when I am surrounded by them. I then came home and decided to take some time out and an actually sit for a minute. Anyone who knows me knows I have a tough time staying still for to long. I started watching Patch Adams. What a great movie! I laughed, I cried and I could relate to his principles. There was this quote in the movie that went a little something like this..."when I am helping others I forget about my own issues for a bit". I think for me  that is why I write these blogs. When I write it is from the heart. It may not be the best writing but at least I know deep down somewhere someone may read it and feel better or relate. Patch Adams lowered medication intake, depression and overall health in the hospital just by bringing happiness, joy and a positive outlook. I recently wrote a blog about this. I strongly believe it is true. Depression is such a big part of having a chronic illness. I don't think alot of people understand it. They see me and I seem to look fine but on the inside I have all these unanswered questions. Alot has changed in my life. I have noticed the people who have stuck by my side made me feel super positive and also give me the support I need not to fall into the trap of depression. I try everyday to remind myself of all the great things I have. Yesterday watching my nephew run around and laugh made my day. I still have alot of unanswered questions and I probably will always have them as long as I have this disease. The thing is this disease although has been difficult at times it has also been a positive way for me to learn my true strengths and to not take everything so seriously. I see the humor in things and I totally enjoy being able to share through my blog. If it was not for this disease I would not be able to help others with my bad grammar....LOL The  thing is like Patch Adams said, "When I am helping others I forget about my own issues for a bit".

I received an email today. It was actually in my hotmail was someone who stumbled across my blog. I felt so grateful that this individual took the time to send me an email thanking me. I was never sure what would come of my posts except maybe me learning to accept my disease one day at a time, I never expected comments and letters. It feels so great to know I have a good support and as long as we are helping each other through the highs ands lows we will always bet better.

Thursday, January 12, 2012

Yet another great reason to get Motivated!!

Welcome to the "POWER OF MOVEMENT"
March 4th 2012
10:30am Vancouver Creekside Communtiy center
Go onto the link and then JOIN MY TEAM!!!!

For those who know me well you know whenever I am faced with adversity I tend to do stuff to keep me busy , balanced and to remind me that I feel good when I am helping others and supporting a cause that I strongly believe in. I have registered for the POWER OF MOVEMENT in Vancouver BC. It is an hour long event to raise money for arthritis research. The research is so important to me because it means that maybe, just maybe we can start to find some cures for this chronic, debilitating disease. I want to share some facts with you today about some of the things I am learning about statistacs.
4.6 million canadians live with arthritis and or autoimmune diseases. It is the most common cause of disability in canada costing 33.2 BILLION dollars a year! That is crazy! There are over 100 types of arthritis and auto immune diseases. Most common Rheumatoid arthritis, Osteoarthritis, AS Anklylosing Spondylitis ( this is what I have), Lupus, Scleroderma, and Juvenile arthritis. These are only a few. All the money raised goes towards doing research for these and more. I get excited about doing good things and since I live with it everyday I can tell you it is SO important to me to be making a differnce in my community by supporting this. It would mean the world to me if you could join or doante!!!!

Tuesday, January 10, 2012

Tough pill to swallow

This is a tough post for me because yesterday I was hit with a reality check that I didn't want. Part of yesterdays stress was my own doing but on the other hand I wish I would have received a reminder letter, or something just to confirm I was going to have to deal with a deductible. For the most part when people have a disability and have to take medication there are alot of costs that come into play. Depending on your income and what type of medication you go on will make or break you. I feel like it at first is all so confusing trying to figure out the process of drug approval and then who is going to cover the huge costs. Lets see I work full time but I don't make a ton of money. I have to live, pay rent, eat, all adds up. There is insurance, and medical insurance, also physical therapy. In the end it all adds up. What I have a hard time with is that I need a good quality of life and in order for me to have that I need to be taking the best treatments that work well with my body. In my case we tried all the pill form of medication before we realized they were not working, also I had to then take other pills to help with the side effects of that on and so on. We finally decided to do the humira. Not knowing much about the costs I was pretty shocked when I saw how much it was. I was lucky to have two forms of extended health and one would cover most of it but the process to figure all of it out was overwhelming. I started my humira in may of 2011 and I assumed since it requires government approval per calender year that my anniversary date would be May. When you register for Pharmacare it is dependent on the amount of income you make to determine what they will assist you with.  You also have a deductible that must be paid every year. Once you have reached paying that deductible you can then expect them to pay 50-70 per cent of your medication. I am not sure if me typing this makes it easier to understand but it costs a far bit. In general with out coverage it can cost from $15,000.00 to $20,000.00 per year mine is $18,132.00 depending on if you have coverage. The drug company does offer an assistance program but only if you qualify. Abbott drug company claims they have given $80 million dollars worth of humira from the time it became available.......ummm I didn't get any...???? Anyway back to yesterday. I went to pick up my humira and BAMN guess what a delectable was due.....I do not want disclose how much but enough to make my stomach sink and me to feel nauseous. I actually had to leave the pharmacy and figure out how to pay. The thing is I assumed that may was my renewal date for the deductable, and the re-approval. The government runs January to January which means January is when you MUST pay the large deductible. I had no letter to remind me, which I guess is alot for them to do because they are to busy taking my money..........This was only my first year on this medication so I still am learning the ins and outs. Just would have been nice to have the heads up. Most people do not ever ask me about the financial end of it but I fully understand why I feel so stressed out when it comes to money. Thankfully for me I have some insurance coverage that allows me to get most of it back. I unfortunately must pay for everything upfront then wait for the sucks!! I honestly was not expecting yesterday to happen so  I was caught off guard. For anyone taking these medications it can be hard to find all the ins and outs and it is truly through having theses things happen that I learn how it works.

I am very grateful to my dad yesterday for being able to help me in my time of need. I was in a total finacial jam that determined if I would take my injection this week, actually my dad has been the reason I have been able to do my medications. I am not afraid to tell you all that I had to turn to my family for help. With out it I would not be writing these posts and having somewhat a better quality of life. Asking for help is very hard to do. The best part is I am one of the lucky few who get most of it back it is only a short term loan. I want you to think of this the life of an arthritis patient the cost of my medication from now til I am lets say roughly $465,000......that my friends is a tough pill to swallow!!!

When you wonder why I always post I want to win the lottery or I wish for a money fairy to drop off little enevlopes of money you can see why....By the way I am positive one day I will win the lottery!!!!!

Friday, January 6, 2012

New respect for life.

 Some of us get up everyday and do the same thing. Some of us get up everyday and touch a life, change a mind, open a new door. Some of us get up everyday with a different respect for life. Myself I go to bed in hopes that when I get up in the morning it will be a great day pretty darn simple. I would like to change the world, make an impact and find a way to have world peace but for now I just hope that when I get up I can put my pants on...LOL. What would I give to not have arthritis.....what wouldn't I give to have arthritis. Although tough at times it has given me compassion, strength, knowledge, and has made me appreciate my life. I have a deeper respect for my body and those who suffer with any chronic illness. I appreciate the little things. I read an article about a girl who found her silver lining in her illness. It gave me motivation to write this blog this morning. I have also been reading alot on aging and arthritis. There have been a ton of studies done and what I took out of all those studies is that the people who stayed active, healthy, ate well and had the right attitude found it easier to deal with the pain and struggles of arthritis and or a chronic illness. The stress and coping strategies they tested allowed to see what would counter act the negative impact of a chronic illness. The following areas of study included socialization, knowledge, physical activity, friendship/support, acceptance and helping others. What is most apparent in the readings is that the people who had not accepted their disease were not as happy, active, healthy and required more medications. Also the people who had minimal support or were alone from the diagnoses also did not do as well. It was not until one of the studies was finished that these who did not do well in the test realized changing their beliefs, attitude, and thoughts would actually make them overall feel better. It is easy to get caught in the downhill spiral of disease, it is easy to feel overwhelmed and worry. It took me a very long time to find my silver lining. I now run, I try harder and like I said I don't take my great day for granted. I have people in my life that enhance it support me and are a constant positive support for me. I stay very up to date on the latest drugs, vitamins and anything that will help with my arthritis. I have yet to accept certain aspects of the disease but I have accepted that I have it. Knowing all this makes things a but easier for me.  One day a couple years ago I was trail walking/running in Deep cove. I was having a difficult day with my arthritis so I decided to go for a hike. I got stuck coming down the trail. My sciatic nerve seized up and my leg was not responding to what my brain was telling it to do. I ended up just standing there unsure of my next steps. I ended up sitting on a rock and the tears started to flow. I thought I would be stuck there, in the woods. I spent a good half an hour just sitting there thinking. I calmed myself down and slowly stood up. It took me another hour to get down the hill which would usually only take 20 minutes. How could this be my situation......what was I going to do about my frustration? I ended up turning that frustration into motivation which then led me down that trail that led to arthritis runs, donating time and being an advocate for the  cause. I in return have met the most amazing people, I have learned so much about my disease, and besides my injections my attitude is way better. I have found my silver lining. Although I have yet to figure out my path in life I know if I stay positive about it good things will come my way. "keep on Keeping on"
  I'd like to share these quotes,

"In order to change in a health outcome, patients must change their thoughts, attitude and belief's", James McKoy MD.

"Without my chronic illness I wouldn't have found my passion for life" Elizabeth Wertenberger.

I have said it before just like other have said it.........sometimes at our weakest moments we get the clarity we need to figure out the next step. It is when we are at our lowest points we truly see our true strength and willingness for better things. I choose to see that my disease has made me a better person. I did not know how strong I was or how determined I was until arthritis came knocking on my door.