Friday, December 30, 2011

New Years Resolutions

We all do it every year. We sit back and try to think of things we would like to change for the new year. It is always interesting what things I can come up with yet never follow through on. Seems to me I have been making the same new years resolutions every year. This year is different. When I reflect on all the changes in my life the past year I feel confident I have grown enough as a person to move forward with the next big changes. I have let those go out of my life that I felt were not enhancing my life. I have allowed new friends to grow which have brought me strength and true happiness. I have learned that the things I need around me to complete my life are simple and easy. As we get older things change dramatically. I remember New Years was always a time to get gussied up and hit the town for some great fun. Now I am content on staying home cooking a nice meal and watching a movie. When I reflect on this past year I think about the changes I made with my arthritis. I started a new drug which changed my life completely. Besides being sick and learning the ins and outs of this new drug I was able to physically accomplish more then the previous years. I had 2 newspaper articles and also was able to help and donate some time to the arthritis society. I learned how to crochet and although a few of you who own my "Hot Damn" dish cloth may state is a bit small, I want to let you know it was actually a blanket.......LOL just kidding it is a dish cloth! My cooking and baking has improved dramatically. When I say dramatically I truly mean dramatically!!! I also took up a bit of love for the kitchen and trying new dishes. Although I did not accomplish any of the things on my new years list I still accomplished some. Key word is some. With this year fast approaching I have a couple new years resolutions that I hopefully can accomplish. First I would like to pay my debt off,  I would like to do a half marathon, I would like to get in the best possible shape, and  I would like to be healthy. I am also going to try to be a vegetarian for half the year. I would like to be healthy enough to spend more time with my friends. All of these things are attainable with discipline and motivation. Resolutions are a good way to start from scratch and get back to basics. I have read my upcoming horoscope and it states that this coming year will be a good one for me. I feel excited about the changes I have ahead of me and I look forward to all the wonderful memories I will make. The best part is I know that I have a great family and wonderful friends to help me reach all my goals. I want to put this past year of sickness and struggles behind me and embrace a new fantastic year ahead. My heart will be open, my mind will be ready to learn, and my mouth will be ready to laugh. What does not break us truly does make us stronger. For every obstacle we encounter and conquer, a  stronger person shines. Although I have had struggles I still see the light at the end. I refuse to let 2012 go by without living, laughing and loving just a bit more.

Thursday, December 29, 2011

Good day!! Yes today I woke up on the right side of the bed...although a little stiff my mood is pretty great. I'd like to share a bit about my mornings. The mornings at times can be a very hard part of my day. Generally since I have been on the humira I have been having great mornings but before the new drug I was a mess. I bet you may crack a wee smile as you read the next part.....I would like to explain some of my morning thoughts prior to the humira. I think I may have come up with some great inventions really......My alarm goes off at 3:45am YES 3:45AM. I then consist on hitting the snooze button a couple times, then try to lift myself up. Some mornings I could barely lift myself up so I would roll over like a dog and use my arms to get me up. The stiffness and pain was unbearable. I would have most of my clothes ready for action, but depending on how stiff and sore I am  determines what I would wear. I actually got to a point were my shoes were pre-laced or velcro'd and my pants were ready for easy step in. My worst issue always was about the underwear.....YES underwear. When you can not bend over to grab anything and you can not lift your legs properly, putting things like underwear on is a bit difficult. I came up with a system that worked really well for me which I will not describe but one morning I thought about cutting my underwear and attaching Velcro on the sides. I bet you are laughing. Well  I never got around to it because I started me new meds. It did cross my mind numerous times but just never could quite bring myself to cutting my underwear.
  I do not get sad about those days. They actually make laugh at times. I know how ridiculous I can look in the morning. Like an 80 year old woman trapped in this 33 year old body. I like to see the humor. Those days are behind me for now. I do feel we have our best moments of clarity at times which are difficult. My moment of clarity was when I decided it would be better to cut my NICE underwear and put Velcro on it so I could get it on easier.........That is the day I decided to go on HUMIRA and I have yet to put Velcro on my underwear.

Wednesday, December 21, 2011

The good The bad and The ugly

As I sit and think about all the goodies packed away in my freezer for Christmas my mouth starts to water.......butter tarts, snowballs, Christmas crack. Oh how I love the sweets. The other night I walked to Whole foods and ended up at the bakery. First off stores should not have bakery's they only cause trouble. I bought a creme brule'. I ate it like it was the last one I would ever have. I took my time enjoyed ever bit of it. It made me feel happy, my soul feel happy, and it brought a bit of peace into my life for a brief moment.....THEN ALL THE SUDDEN I heard this little voice saying "Erin you know better, this is your arthritis speaking and we have spoke about this so called treat eating already. You know that when you eat this stuff you piss me off and I hurt you" I finished the last bite I told myself this will be the last creme brule' of 2011......and 2012 maybe emotional strength depending. I would also like include that holidays do not count, or birthdays. They could be my free days. My point here is food makes a huge difference with my arthritis. I am now able to trigger my arthritis with certain foods. I would like to share some goods, some bads and the ugly........
What I have learned is everything that I love and have found comfort in is everything I should not be eating. Part of my "I Will" attitude for 2012 is to make a drastic change in my diet. Lets start with the UGLY. The ugly foods are foods that you know are not good for you. Foods high in saturated fats promote inflammation and can cause major issues with pain management. These would include things like french fries, onion rings, anything deep fried. Also anything with Omega 6. Omega 6 is most baking icing, sweets, candy and can cause major issues with inflammation. All those wonderful tasty bits that come bagged that seem to help me when I am down...CHIPS and dip these are bad. Oh gosh chips and dip a family staple. Anything that you can buy at 7-11...LOL is bad for you. Also beef I love a nice burger but beef is very high in saturated fat and even extra lean is not the best idea. Anything that is processed is not good. We've all had that craving and we go through the drive through, half an hour later we feel like crap. The problem is all of that food is process and has been modified and had stuff added her and there. Ever wonder why McDonald's french fry will never go moldy???? hmmmm that can not be good for you. My last rant is sodium, be careful of anything with salt. Salt causes water retention that can be extremely hard on the joints because it also bring about my favorite thing which is inflammation. You must be careful with any canned veggies. Be sure to rinse them off very good before cooking with them. Check the back of your labels for sodium, fats and try to make them minimal amounts. One more thing about the ugly...POP or any canned diet, no caffeine bubbling drink. Just don't do it switch to water, pure fruit juice and or herbal teas. I am sure I have only skimmed the top of the ugly train but now for some of the bad. I consider the bad to be foods I consider to be healthy but are just not the best choice for people with arthritis. Potatoes, peppers, tomatoes, and strawberry's are my top ones but when you search the intranet you will see alot of readings stating you should also be aware of banana's, pineapples, oranges, apples. Although I believe that for the most part a good balanced fruit and veggie plan is good just keep it all in moderation.  No for the GOOD...yes the good. Since I have listed off everything I feel a little sad that it seems there is nothing to eat in my house...but AL LASS these are some of the things that are beneficial for us arthritis people. Olive oil, Flax seed, Salmon, Halibut, Squashes, Onions, Beans, Leafy greens, mulitgrain anything just try to stay away from white flour. Cinnamon and turmeric have been shown to help reduce inflammation in the body so it is important to make sure you are somehow incorporating it in there. The easiest way to remember the GOOD is to think back to basic food groups and try to stay away from anything white, or processed. I am not a pro at this I am only learning that as I get older and my arthritis progresses I want to have a healthy strong body. For every person it is different but you need to try out some to see to what extent it will bother your system. With autoimmune diseases it is important to keep our engine running properly. Make sure you take extra immune boosting vitamins, and drink lots of water. Try your best to squeeze in 2-3 fruits a day but most of all just try to eat in moderation. I am not a doctor and I know I have not touched every single item on the good, bad and ugly but I will try to update you every time I read more news.
While I sit here and write about all this food I have decided that maybe I should take all this baking to work or give it away. Gosh it's amazing how everything I baked is not so great for me.......very depressing actually.....okay well with that said please think about what you are eating this Christmas and how it is effecting your body, mind and spirit. The GOOD will make you feel good, the BAD will make you feel bad, but to much of the UGLY is just not good at all........

Friday, December 16, 2011

Acceptance and the "screw you attitude"

 I recently read a post by a woman who just was diagnosed with Ankylosing Spondylitis. She currently has a couple other autoimmune diseases so I can only imagine that this current diagnoses only added to her stress. I find social networking, emailing and reading others blog posts has really help me come to terms and work on my acceptance of this disease. Last night was my injection and I did really well all things considered. I now have been sick though for a very long time. I can tell since September 8th I have NOT been sick a total of 25 days...the rest I have been fighting off all types of fun stuff. My Body is in constant attack mode all the time so I am understanding why it is so hard to get better.  I had a moment after my injection last night where my world broke for a couple minutes. I basically felt the white flag come up and me give in to this disease. In my head I said I give up.....I just don't want to do this anymore....I put my head down and the tears started to fall. I looked at Roger who was holding my hand and had his arm around me and I said "I just can't do this I am so tired, I seem to always be a sick and I just can't figure out what I need to do to get well".  Roger is always so good with me. I can not even imagine how hard it is on him some days. It can really weigh heavy on me, and lucky him gets to see all the colors of my rainbow if you know what I mean. He is always positive and he really has accepted this as a part of me. He allows me moments to break and he lets me cry but then he helps me snap out of it. I think because I was so tired last night I just felt done. I did not want to do the injection, I started to ask myself  if it is worth it or not. I can go off it and be in constant pain, or I can stay on it feel good physically with my back but be sick all the time. I just don't know why I can't have a happy medium......or is that my happy medium???

I do not think I am ready to accept this as my life. I don't think I want or have any desire to accept the arthritis. I have come to terms with the fact that AT THIS POINT there is no cure but I refuse to accept that that is the way it always will be. I want to believe that one day I will go to my specialist and he will say " Erin we have found a solution, a cure". I need to look at last night as a motivation for me to fight back. I do not want to let this get the best of me and my disease does not make me who I am . It does not define me. In 2012 I am going to try some new things to help me on my journey. I want to get a nutritionist, a good natural path and I want my life back. I want to do all the things that I feel this has taken from me including at times my spirit. I WILL get better, I WILL run my half marathon and I WILL find a way to accept what I can one day at a time. My saying for 2012 Will be "I WILL" because I will find my way. Someone said acceptance can bring freedom and clarity........I have yet to fully embrace it but I think I will find my freedom and clarity by fighting back and NOT accepting this disease. By not accepting it into my life does not mean I am pretending nothing is wrong it just means I have thee upper hand in my a "screw you" attitude. Maybe some will disagree but as far as I am concerned 2012 will be a great year as long as I stay strong I WILL be fine!

Very well said.

Good morning world,

After this frustrating past couple weeks I am at the end of my rope. I recently read a post that actually clicked with me. It was in regards to a woman who has been diagnosed with more then one form of autoimmune disease. I can not even imagine!! I have at this point only been diagnosed with one and it is way to much for me. She spoke about what is happening in her body in such a way that I actually had a different perspective on how I explain it to people. It was just so simple. In short form if you can imagine the body thinking that all the organs joints, and other parts are foreign invaders. Basically the body is attacking all the healthy stuff becauae it is confused. I take medication to help with that. It is just sop simple really. There is so much more to it but I am alwasy stuck when someone asks me to describe what is happening in my body. It was also comforting to learn that she also is sick alot. Apparently this is normal. My body is in complete attack mode all the wonder I am tired and sick and have such a struggle some days. It was great to see a funny yet unlifting post by someone who is going through what I do. I will never get tired of explaining to people what I am going through, if it means making them aware of a disease like arthritis I am game.

Wednesday, December 14, 2011

Being honest

I said from the beginning I would always be honest with my blog entries. I want to help others going through what I am going through on a weekly or daily basis. When I write I do it it express my feelings or emotions. I am only human. I am not depressed or trying to be negative but only honest with what I am feeling. I do not want you to think I am being a Debbie downer but I will be truthful and say my situation sucks. Today I am feeling the frustration of having this disease. Out of all days when I am trying to see the eternal light at the end of the tunnel someone told me a story that made my heart sink and I felt this heaviness over my heart. You can not help but think of the negative at times. We all do. If we are to be truthful to ourselves we first must admit that we all can get down on ourselves at times. Today I am hobbling a bit. Of course ever person I work with sees and feels the need to ask how I am doing. I know they all care and I appreciate it. There just happened to be one person who stopped me on my hobbling way to let me know her older girlfriend has something similar and she was on Humira and was sick all the time........also she added with a semi  laugh "can you believe she still ended up in a scooter because she couldn't walk"...............................All I could say is wow, I hope she is okay. Talk about kicking someone when they are down. .I walked away and instantly started to feel my heart sink. What if.....what if...what if....then this little voice in my head says ERIN pick your ass up do not let others experiences get in the way of your own, then a couple more what ifs and a quick head shake and I decided I needed to write about this. I have tried to think about every outcome of this disease but what keeps coming back is how unpredictable it can be and how it is different for every person who has it.  In all honesty it is hard at times to always be positive when you read stuff on the Internet or hear stories. I just wish that others would consider the things they say before they say them. When you are already feeling down the last thing you need is a kick in the balls. I do not think it was intentional but it got stuck in my head. I think if I was to pretend that I am feeling positive today it would a lie. It just happened to be the straw that broke this camels back this morning........

I have been sick off and on since September. My poor immune system can not decide what it wants to do. I try to be healthy and doing everything I can to stay as healthy as possible, but here I am sick again. I have been coughing so much that there is a serious amount of pressure on my back and I am walking a bit funny. The humira is wearing off and injection day is coming up so it is pretty normal for me to be hobbling a bit. I suffer from fatigue already with the type of arthritis I have but when your body is working harder then normal to keep everything healthy I get extremely tired quickly.  I am going back and forth trying to decide if this medication the so called "miracle" drug is actually helping me. Is it worth it to be sick all the time?? or am I just having a tough time on it. Do the pros's weigh out the cons? When I feel great I don't complain but now I need to make a decision by Thursday if I want to inject this drug in my body so I can physically function normally, although my immune system hates it. The question is, is it worth it? Do I want to end up in a scooter.....NO will I end up in a scooter...NO and for those who feel like it is helpful telling me negative stories....I must be honest and tell you it is not helping me. I just want to wake up one day and feel normal. I do not want to put these drugs in my body and have to worry. I do not want to think or dwell on the what ifs. Here's the good news, tomorrow I will wake up and be in a better mood and I will feel positive again. You must be honest to how you are feeling each day and accept that everyday is not going to be a good one. Pure honesty TODAY is not my best day but it will get better.

Wednesday, December 7, 2011

HOPE in the battlefield

 Today's post is going out to someone who inspired me yesterday. My dear friend Jan has been going threw Some personal health issues and yesterday did not receive the care and attention she needed. I called her this morning to hear only things that would "break" a person who is struggling with their health. We rely on our Doctors to guide us down the right path. I personally have gone through a few specialists because they did not mesh with me. My first specialist was horrible, basically told me I was fine there was nothing wrong and that I basically needed to suck it up. Here I was diagnosed with something by my GP, and was sent off to a specialist who told me to suck it up. I remember waiting in the room with my mom and when he came back to the room I emotionally had given up almost excepting everything he had told me. I then decided to go to another specialist who was better but a bit to old school for me....the relationship worked but I still felt like I was not receiving the guidance and positive outlook I needed. It is imperative to have a doctor who believes in the cause he is working with, that offers hope, positivity and suggestions to ensure your personal quality of life is at its max. The bedside manner of some of these doctors is outrageous! Why are you a doctor......I am it to help people?? It takes a special person to really be a GREAT doctor. I now have the worlds best specialist. The moment I met him I knew I would have in my life to help me have a great quality of life. He has changed my life. Best of all when I go for my check ups every 3 months his positive attitude and his knowledge always makes me believe that one day they will find a cure. I had been putting of injection therapy for a long time because I was afraid.....I still am but the difference is he changed my mind to help me look at the bigger picture. My quality of life was the most important thing. He changed a non believer into a believer. I am now on my 5th month of my injection treatment and although we have had some bumps I feel like I have hope for my future. I try not to listen or read to much about the bad stuff with my drugs I just go with it....what is meant to be shall be BUT  now looking back at the way my life was 5 months ago I would not change a thing or decision I have made. I have been my own health advocate and really have stayed passionate about turning my situation into a positive thing. A regular saying I hear alot is "God only gives you what you can handle". I am not religious, more spiritual and I believe I've been given this disease to help and to inspire others that we must not give up. We can cry be frustrated and feel like the future is a scary  but we must not give up. My mom constantly reminds me to be more positive....I honestly really try. No one can ever understand what it is like to stand in someone Else's shoes, this is understandable but we can offer them hope and support in the times they feel like they are falling...we can catch each other. Cheesy as it sounds there is hope. I get hope from the great things that happen around me. I get hope by the support I feel. I get hope knowing that I can offer my experience to someone else and hopefully give them the lift they need to fight and continue fighting.


Friday, December 2, 2011

Dear Santa

I love christmas! I love the holidays. I think what I love the most is that fact that growing up my mom would always decorate everything. It is not any of the presents that santa brought that I remember but the holiday decor, love, and food my mom made. She really made the holidays special with her angel hair mantel peice. I always remember looking forward to putting up all the decorations. The trip to go get the christmas tree was always an aventure, mom and dad could never seem to agree on a tree. One year I remember my dad got this dinky tree which we ended up having to place up on tires to make it the time no one was laughing but now I laugh. Every year my family would have an open house on Christmas eve and all the family and neighbors would come by. I miss those days. When I think about christmas I think of all the family times together and christmas eve pj's! My brother sister and I would have so much fun with the annual fashion show. Sometimes I wish I could go back to those days. My mom would always make her shortbread, moon cookies and a wack of other baked goods. The classic Eggnog!! she makes the best damn eggnog. Two glasses and your done! Homemade and full of booze. The holidays for me are really about the memories, the giving of love and the family times.

I have not asked for anything this year....what I asked for is peace in my life, health in my family's life, a and a great year of success with my personal health. I wish all my dearest friends alot of luck and love. This year has been filled with alot of change in my life and I only wish that for the new year I am able to continue getting super healthy and stronger. Christmas is a time to reflect on the past year and get ready for the new one. I plan on making a tremendous amount of memories over the next month and embracing Christmas in my home. Yesterday we bought a tree....NOBLE FIR...ohh lalalala it is a beautiful tree. It is funny because when Roger and I buy a tree we always seem to pick one that have some imperfections. Nothing is ever perfect and we all have our imperfections but it is how we represent ourselves or in the trees case decorate it...that always will bring out our true beauty. I will find ornaments to fill all the little holes in the tree.

This year when you are sitting at home or with your family just stop for a minute look around at all the laughter, happiness and love around you. Often we never stop and just take it in.....I think that is why I take some many pictures. I can look back and remember certain moments. I have this relaxation book and one of the methods they use is to stare at a photo for a minute, then close your eyes and meditate. What happens when you look at a photo for one minute is it gets some what burnt into your system if that makes any sense.....once you close your eyes after you can still see the picture. I want you to take a minute to look at all the happiness around you and burn it into your memory. The all you have to do is close your eyes and think about the image and it should will appear.

Wednesday, November 30, 2011

Holiday time

Well I just got back from my yearly November trip. Welcomed back with cold weather and a wish for warmer weather. I clearly function better in the warmer sun drink in hand.....This week has made it very clear to me that I do function better in a warmer environment. Two days into getting back I was sore, stiff and achy again. I can not believe that I work in the freezing cold to be honest with you. I work early mornings in a cooler...I clearly am nuts! I love my clients and at times I love my job. I am surrounded by beauty everyday. BUT it is cold and a labour job which requires me to lift, pull, push and move around in a cooler. I have looked into going back to school but am at a complete loss for what I would be great at! I think in the new year I will look into it further. I can whip up a wedding in a day but maybe I am done with the whole flower thing. Let me ask you this, if you could go back to when you graduated and re-do schooling what would you be doing? For those who did not go to school right after graduation do you wish you would have gone? My biggest regret is not going right away. The problem now is money. Lets be honest it is expensive to live where we do. There just is never the right amount of money sitting there waiting to be plucked up for school. My goal for the new year is to really figure out what is going to make me happy, live long, and feel accomplished. What is your goal for the new year???

Thursday, November 17, 2011

What you see is not how I feel.....

Very interesting night last night!! I volunteered at the Blue Bird Gala for the arthritis society. What a great event. I met so many different people who all treated me so great. I was very honored to be able to hear a woman speak about her life and living with arthritis. I felt like she was talking about all the things I constantly think about. I got extremely choked up as I heard her tell her story. Although she has a different type of arthritis I still find the stories that all arthritis patients have to be alot alike. Today I changed my status on face book with a quote someone said. To sum it up the quote it said......although you may see me and I look normal to you inside I am struggling. We are often afraid to express how we feel about our situations. We get worried about how others will feel or judge. Everyone struggles in some way. Last night I was surrounded by people who made me feel like I did not have to be embarrassed are ashamed of my situation. I often think because I look normal and seem it that maybe I am nuts to think others will listen and understand. For the most part people are very understanding but I do meet others who pass alot of judgement. It was so great to hear someone talk about how afraid they were for certain aspects of life. The raw truth is this....although we seem like we have it together I am almost 100 percent sure that we all at some point sit and worry about our future with a debilitating disease. I want children but will I be able to? I want a good job but will I be able to be with a employer that long term will understand the disease? I want to be able to everything I can but part of me is scared about my future. Who will take care of me? will I end up with hip surgery? or even using a walker.......These are just a few questions I can not answer. I try not to think about them to much but last night while Trish was speaking I felt like I was listening to all the things I feel. I am scared, there is no question about it, I can take medication to make everything seem great, and I can have a positive outlook but deep down I am scared. I know as long as I keep living a healthy meaningful honest life I will always feel like there is hope but, I am not afraid to tell you that I am scared. I like to participate in events for the arthritis society because it reminds me I am not alone in this battle. I have so much support and so much love that I know I will conquer all my obstacles. In life we must not be afraid to show who we are. Sometimes be vulnerable and let people in. Last night Trish made a huge impact on me and I hope that in turn I can impact someone aswell.

Sunday, November 13, 2011


These past couple weeks have been excellent!!! I am feeling back to my normal self. I have been able to get back to my healthy life style of being active. Limitations are a very hard thing some people deal with when they have a debilitating disease. Some slip into a funk while others fight with every once of their being. I have found that the more active I am the better i feel and the better attitude I have. When I am struggling I can feel myself want to sit around because physically I am unable to be active. I have done a bit of speaking at some previous events where I really tried to express how important mentally and physically it is to be active. Some days although I still feel tired I really do my best to get out for walks and runs. I live in a beautiful area filled with the best walking trails and the best scenery available. The reason I started to run was because I basically was told it was something I was not going to be able to do. It was not until my sister finished her first half marathon that I thought....WOW wouldn't that be amazing to complete that and show others that it is POSSIBLE. I have been trying to work myself up to at least 10k and I have gotten pretty close. The most I have done is 9k and it was hard. Although I was out of commission for a couple days after the success was great! My goal is to run a half marathon. I would love to be able to run one with my sister. I can not even imagine the sense of accomplishment that would be.....the thought is a big one but achievable. The only limitations are the one we put on ourselves. You will never really know your absolute limitations until you try. I promised myself I would do a half this year. I think right now it looks like it will be 2012 but I am still hopeful that when the day comes I will show this disease it is not in control. NO ONE controls this girl!! LOL Anyone who knows me knows that statement is true. Some days I hate that I am injecting this product into my body but the quality of my life is so much better. I feel like my legs and body have life.
This week I had 3 people say that I was to young for arthritis. I told those people this. I was just given this challenge to help me appreciate my life more. I do not take walking, running and being able to be active for granted. I am not saying that those people do I am just saying I have a better appreciation for my body and my quality of life. If there was one thing I could pass on to anyone dealing with this or any debilitating disease I would say don't stop believing.....just always have faith that god gave you this for a higher purpose. I think mine was to teach others that a positive attitude, and willingness to achieve the things we once thought were impossible is the outlook I am to have.

Friday, November 4, 2011

Family & Friends

Family is very important to me. I love my family! I am really lucky that I have great family. I look at other people relationships with there families and I just see how lucky I am to be so blessed. My biggest supporters have been my family. They have attended most of the events I have done for the arthritis, they have sponsored me, stood on the sidelines cheered, and also shared tears with me. I can not imagine not having anyone to help me through the times that have been tough. Some days after appointments I have called my mom just to cry and tell her how unfair it is. I usually have a good cry and then she reminds me that I need to stay positive and keep a strong frame of mind. She lets me have my down moments but also does not let me fall to far. My nephew Caelan....ohhh that little monkey  currently he is the apple of my eye. I am so in love with being an auntie is is crazy. I look at him and my heart fills up with so much love. I can not wait to watch him grow up. He makes me want to be healthier and better so I can always keep up with him. There is just so many happy things in our family.  I have so many things to really look forward too. I could go on and on but what I can tell you is this.........Family is where your heart is, where you grow and learn, where memories are made, and where you will always be loved. You will never be judged and always be helped. Family is Love , Love is Family......( I wrote that myself) Good I know!!

Friends come and go so they say.....but it is so true they do come and go, and some are brought back after long periods away, others fade, for some life takes over or distance is hard.  In this process have been able to determine whom is with me for the long haul, who is with me in spirit, and who is uncomfortable talking about aspect of this disease, and who my lifters are. I come first in my life and I made a decision to keep happiness around me. Life is tough enough why deal with drama. I want people who enhance my life not make think about whether or not they care. It's pretty easy for others to place judgment or not care, but we must remember that just because a person never talks to you about your condition does not mean they don't care it could mean they are just not comfortable with it. I did not choose this disease TRUST me it was not in my plan to have to deal with this at all. But with that being said I think I do really well. I keep my chin up, I help others, I think I listen better and I understand that not everyone will understand or get it. I will say that I am lucky to have wonderful friends all over the place. I have friends I have met online with my disease that have become pillars of strength and motivation. I love people who inspire me, make me laugh and most of all just let me be me. I do not waste my time on others who may not have good intentions, or are negative. I only now surround myself with those whole truly bring me happiness and joy. My perspective on life is a little different then before.....there s no time in life for unhappiness when it comes to friends. There is ALWAYS time for laughs, giggles, wine and some nice cheese. I would not be who I am with out having great friends in my life. I defiantly know that I am grateful for those who have truly helped me tears, and all. You are the reason I am doing so well today. Thank you. To all those near and far you are all in my life to enhance it!!

Thursday, November 3, 2011

Injection Day Today!

Today is the day for my injection. So many people have asked how I have managed my arthritis and what I take. I am currently on Humira which is a injection form of medication which I take every two weeks. I have may have mentioned that the first time the doctors wanted me to try it I was super hesitant. It was not until April 2011 that we decided it was in my best interest to get my quality of life back. I have met some people that refuse to do this medication but I figured that the pros might weigh out the cons so should just try it. The problem with these so called miracle drugs is that they actually do work well until something seems to go horribly wrong. I have read some stories about others on Humira and the devastation it has caused them, but flip side I have read some amazing stuff too. There are issues going on in my body that already exist with my form of arthritis. My immune system is compromised and basically my body works against it self fighting good cells and creating me physical issues. My body thinks it is healing itself but it is actually fighting itself. The inflammation builds up making the body think it is protecting itself but puts me into my worst physical condition. So with the Humira it is a TNF blocker which stands for tumor necrosis factor it binds to the the TNF blocking the process of inflammation. The injection itself looks like your typical epipen. I usually do it at night so I can sleep through the side effects. Roger is my injection support system. He gets me mentally prepared and also holds the area of skin at the injection site. I tend to do the injection in my leg because the belly hurts so much. There is no question about it, it is very painful but it is quick and usually there are some tears and I am good to go. My issues are completely mental. Since it was not something I was mentally prepared to do and I am taking a risk by doing this form of treatment it is very hard for me to put this drug in my body. Like I said we are hoping long term the pros out weight the cons. Since the Humira makes my immune system very weak I always have to be extra careful. I can not be around anyone who is sick, or not feeling well. Once you get sick on this medication the body gets a bit confused. I recently got sick and the cold turned into so many major issues. I had to go off the Humira and wait until my body was better to handle it. During that time I was put on 2 different anit-biotics and also started a new vitamin routine. Not only was I sick but it was very clear the inflammation was getting bad. I had a really bad month, I was not sleeping well, I could not walk well and I felt like my arthritis was worse now then before I started the drugs. I did an injection 2 weeks ago, although I was not 100 percent but I honestly could not go another day feeling the way I was feeling. So now we are at today.......YEAH hopefully to days injection will be good. I pray it will start to work in the next couple days because I am walking like I have a stick crammed up my.........LOL. My attitude has been pretty positive. I really now just try to not let it get to me. If you want to read more on Humira you can go to the website very helpful tool.

Tuesday, November 1, 2011


So I work in the floral industry....which means I start early. I generally getup at 3:45am each day. I know what you are thinking...I am crazy. I have been doing this for a very long time even before I was diagnosed.Mornings are my worst without a question. I hobble, walk funny and am beyond stiff. I really try to just get up and get everything ready and leave. I am constantly asking myself why I am working in the cold, early morning environment.......It is absolutely freezing in here. The cooler runs at 1degree and whatever the temperature is outside it is in here. Today this morning it was 5 degrees. I think more and more about my future and what I will end up doing. I am constantly told that I should not be working in this environment, and that I am destined for more. I have thought about what it would be like not to work and frankly I would go nuts! Lets be honest most people hate their jobs. I work with people that I am almost 100 percent sure they hate their job. The problem is this, my arthritis has put a certain hold on me placed limits I feel like in some respects it holds me back a bit. I feel afraid that because I do not know what the future will hold for me so sometimes I find I wait for things to just happen. I worry about applying for other jobs and having to tell them about my situation. Although people say they do not discriminate, they still do. I feel like in my life I have had some wild ideas and dreams that I  just have been to afraid to do. Now I struggle with the fact that I am planning on going to an information session at BCIT Wednesday and I am 33yrs old and feel like I have no idea what direction I want to go. I love so many things. So as I let you know what I would like to do maybe you can think about what makes you happy and if you are following your right path.....

I grew up dancing, singing, and being part of a dance school for most of my life. I was okay with ballet but I really excelled in musical theatre, jazz, and tap. I would say I think I was outgoing, but also shy. When I hit 21 I decided to head down to the Roxy with a girlfriend after work. They had extreme karaoke. After listening to her I was wishing I could get on the stage. After 4 times attending I convinced the DJ to let me get up and sing on stage with now one in the club yet. So he did and halfway through my song the crowd of extreme karaoke singers all started to poor in. My legs shaking, my heart was beating...I was nervous, scared and so insecure. The next time we went I drank a little and got up and sang Richard Marks. That night I can in first won a nice bar tab then was told I would be heading to the finals.....LOL FINALS!!! at the Roxy. So about a month later I got to go back and sing two songs....the first was heaven by Bryan Adams second was hooked on a feeling (bad choice) My friends and family came and I sang my heart out. I did not win but I came in second. I met a girl in the bathroom that night, she said don't give this up you are so good...I thanked her but lets be honest she was super intoxicated...or was she????she said..what ever you do always sing. She made me promise her that I would continue this journey .My mom bought me a guitar in hope I would learn to play and sing.......I still have the guitar and I can not play it YET......

Well after this I don't know what happened but I became full of stage fright. It was a after a long relationship I met someone new and we went on a trip to Mexico. One night I think we did numerous shots and they had karaoke at the open stage that held about 500 people. Long story short I got up again and sang Bryan Adams Heaven......I received a standing ovation (keep in mind anyone sounds good when you are drunk) and I had fun also the tequila really helped!!!!
Now I am 33 I sing in my car and I think about things that make me happy in the morning. I love music, I wish that I was educated on only music because I love it. I wish I could play my guitar, my moms piano and read music.

When I think about my dream job in life I think of a couple things. I would love now to help people with arthritis, or a job that is rewarding at the end of the day. I would like to look back at my day and say I made a difference in someones life. We could also go the other spectrum.....I would love to be somehow in music...I think I have this amazing ear for music, singers and what is a good. I wish I knew what path to take. So off to the information session at BCIT on Wednesday to look into some options. Human resources, broadcasting, and health sciences. The next stage in my life MUST be amazing.....I am destined to do something amazing I can feel it and if I don't then I am going to keep trying to be amazing arthritis and all to set a good example. The past couple weeks when I was not feeling well I decided that if I just wait for things to happen they will not, and if I let my arthritis stop me from being great then I am letting it win. I am hoping that I magically can come up with extra money to pursue a new path but all in good time. My medications and living kinda sucks up my money. There is not alot of programs for regular folk to get extra money to help pay for school, so I may have to get another job....LMAO....DREAM BIG!!!!! Maybe I will win the lottery......Fingers crossed. I just don't want to be standing there in 20 years wishing I did more or didn't do enough.

Monday, October 31, 2011

Finding the Humor!!

Today I posted an old post I did called perception and it got me to thinking about humor, laughter and well being. I recently took a road trip top the states with a dear friend. I can honestly it was the best day. I think we spent at least 95% laughing. At one point we almost went through the border laughing. We did pull it together for about a minute and then completely went straight back into laughter.

Here's the thing about laughter when you laugh it gives you a pleasant sensation that triggers the endorphins, increases blood flow, reduces stress BUT the most important boosts your anti-body cells, enhances your T-cells which then leads to as stronger immune system. I like anything that will help my immune system. It was a group conclusion in the car this weekend that there is nothing better then a good gut wrenching laugh. I am still thinking I need to attend one of those laughing groups!! I think I have found my partner in crime I just have yet to tell her.

It is important to take a moment and laugh or smile. we spend so much time worrying about life and situations that we forget to stop and giggle or share a funny story. What makes me laugh is the fact that two woman on a small road trip found humor in trying to figure out if Chickens had Balls....or testicles.........Still makes me smile!!!


Today 1-10 I am about a 4 which is FANTASTIC!!!!

Perception. Last week I was having a tough time with my walking. I can walk but I just look like I am stiff and sore, especially when my inflammation levels are high. It is very clear to others when I am not at my best. I had recently gotten sick and so my doctor asked me to stop with my arthritis injection treatments. So I had gone approx one and a half months with nothing in my system to help with the levels of inflammation and pain. The past 2 week was physically, and mentally tough. I can not remember having such a tough time. I think I have cried more out of pure frustration more then anything the past month. Last week I got so frustrated by the end of the day that when someone asked me what was wrong I said "nothing"...I am perfectly fine. I usually have no problem telling people because most of the time I think I have accepted it, and I like to educate them. The most common thing I hear when I tell people what I have is "wow your so young","you don't look like you should have arthritis","You work in the wrong place","Only older people have it"..................................Okay so I would like to set acouple things straight. First I am 33 so anytime I get a comment regarding me being young I am always grateful!! Truth is there are millions of people under the age of 40 with diagnosed arthritis. There are so many forms of arthritis that most people are only aware of a specific type of arthritis through family or friends.
What I want to see when people look at me is a healthy, positive role model. That is all. I want people to see that through adversity I truly have found out how strong I am and how willing I am to change the perceptions of arthritis. I can not move mountains but gosh darn it I  will move some hills. It is not until someone close to you gets sick that you really learn about illness and perceptions. I always try to educate others but I really try not to preach. I have met others with AS who have done very well.I know some who dwell in their situations. I prefer to stand tall and try my best to change peoples perceptions on a disease that can take many forms.

Thursday, October 27, 2011


I think each entry I would like to start off with my current levels. Pain level between 1-10 is about a 7, low back is causing me issues and lymph nods are really bothering me.

I try to keep my stress to a minimum, but I am not one to be extra care free. I have been told to try to take it easy and live a stress free life....UMMMMM yeah right. There are so many things that can cause us stress during the day, from money, work, people, traffic, and relationships. If I could master the calm non stress life trust me I would. I often think of Julia Roberts in Eat Pray Love and I wish I could do everything she did. The minute I get upset or worried I almost slip into a different role. I can actually feel all the stress start to weigh down on me. With having a disease stress can trigger more then what we think. Stress can actually make you feel worse then you do already.

When we get stressed our body gives off chemical mediators into our blood stream. Some of the related symptoms off stress include memory problems, lack of concentration, poor judgement, being negative, anxious, racing thoughts, constant worrying, moodiness, short temper, inability to relax, isolation, loneliness, and depression. You will also find some more physical issues arise like aches/pains, constipation, nausea, dizziness, rapid heart beats, no sex drive, colds/flu's, not enough sleep, over or under eating, isolating yourself from others, using alcohol, cigarettes or drugs. I can honesty say that i have suffered at least some of these symptoms on a regular basis. Here are a few of the thing I feel are important in managing stress.

A GOOD SUPPORT SYSTEM is key. It is important to make sure you surround yourself with people who can help you, make you feel positive, and be there for you when you need it. Only a few people I know have actually witness me cry out of pure frustration and these people have always been my family and close friends. My second words of advice is CRY...that's right I said cry.....sometimes I feel when I am overwhelmed or stressed I just have a really good 5 minute cry. I always seem to feel better once I have allowed myself to let out a quick burst of emotion. I have almost cried everywhere....not all the time but I have defiantly hit up some elevators after leaving appointments, washrooms, my car, outside, even a back hallway once or twice. The way I work is when I am frustrated or mad I cry....LOL but with that being said my next advice is SING.....singing really loud (even if your bad) can be a great way to let go of stress. I prefer to sing in my car I usually pull up to the light and pretend I am yawning if someone looks funny. Every morning on my way to work I sing a different artist. This more Shania Twain was my pick. I am in my safe place in my car. Also the acoustics are amazing!!!! LAUGH try to laugh try to find the humor. I constantly try to find the humor in my situations. I love to laugh. there is nothing then a good gut wrenching laugh. I have thought about attending a laugh session where a bunch of people get together and laugh for an hour but I have not found a willing accomplice. PHYSICAL ACTIVITY is very very important. I like to go out for walks, runs, and hikes. I feel it not only takes my mind off my current situation but it makes my body feel good, and when my body is feeling good my mood is good. Yoga is great for stretching, strengthening, and relaxing the mind. On my good days I like to get moving a bit quicker like running, stairs and brisk walks. I think because I am stubborn I like to think I can do everything. I am convinced on a great day I can. I have participated in runs that have all raised money for arthritis and it makes me feel so good when I can take part in activities that support my life. Some days I can barely walk well but then i have these days where I feel anything is possible. COOK !!! yup I said cook.....I feel like when I am creative in the kitchen it allows me to alter things, then adjust ingredient's and control what I am doing. Unlike my arthritis which I can not change I can do whatever I want in the kitchen. I usually play music find a recipe and try my best to make it perfect. I am sure my mom can tell some  stories about my cooking along with my boyfriend but overall I have gotten really good.

Well that is about all I have time to write today but don't worry I'll be back tomorrow.

Wednesday, October 26, 2011

Standing Tall

 My reasoning behind "still standing or standing tall" comes from the perception of people who suffer from Ankylosing Spondylitis. The disease can tend to cause a person to become hunched over or have poor posture. AS is an autoimmune disease that basically causes the body to work against itself. It cause inflammation in the joints in the spine and also pelvis, neck and chest wall. What I have learned is that will cause each person different symptoms. It can cause great stiffness limiting walking , lifting and daily activities. The hardest part for me is actually wrapping my head around the fact that there is just no getting rid of it. Depression can play a big role in AS it can be very difficult to deal with,BUT there are allot of things you can do to help make life a bit easier. AS is generally found in men and rarely in women. There is a genetic marker that can be found through blood test which can usually determine if it is AS. Although it took some time to get diagnosed at least we now know and can make the changes in my life style now rather then later.
 I found myself looking for answers when I got diagnosed. I went to a couple different specialists and doctors to finally get the results I needed. Coming from a healthy background of  dancing, playing sports and being active I honestly could not wrap my head around "why me". I hopped on the Internet looking for anything I could find. I found myself so overwhelmed with the different stories and articles it made me very scared for my future. I felt really alone. I started to branch out online and meet some others who suffered from the same thing and I found a bit of relief in this. I think the initial shock of knowing I would have something like this that would be with me the rest of my life was tough. It was not til recently I started to think about a family, marriage and where my life and my arthritis would take me..........I will touch base on these issues tomorrow. I have so many topics to cover......

October 2011 My first post.

Good morning
So yesterday I decided it was about time to get this blog up and going. I will first start this off with a bit about me and my background.I am 33 and have Ankylosing Spondylitis. I was diagnosed a while back and so far my journey has been filled with peaks and valley's. I decided to go ahead with the blog not only for others but a way for me to really express each day what I am going through. I figured I have learned so much about this disease that hopefully I can help someone else, or be a beckon of motivation and determination for others. When I decided to start this blog I really wanted it to be raw, funny, and moving. Writing seems to be the best form of release for me and although I may spell things wrong and my grammar is horrible I still want to write about my feelings. For some this may be another side of me which you are not used to, for others you will know deep down that everything I write is exactly how I feel. Writing a blog gives you the opportunity to open up set everything out there, which is exactly what I plan on doing. Each week I will do an update and through out the week I will try to Blog each day. I hope you will join me on this journey because I feel like it is one you will not want to miss out on.

Love Erin