Happy 1 Year Anniversary

So wordpress was kind enough to inform me that it’s my 1 year anniversary (July 29th to be exact). Throughout this year I have not been as diligent as I would like with the posts, but I hope to be more on top of things for the upcoming year. I have a Yoga for Arthritis book I want to review; a study of tumeric; a look at the role of religion and beliefs in chronic illness; stretching programs; and maybe a secretive event to share with everyone.

Thanks to those who have come, read, and commented on my posts. All I can ever hope for is that the info I post on this blog will be helpful, encouraging, and supportive for someone else.

Stay Loose!

Bed Review

My Lady and I have recently purchased a new bed. When purchasing this bed we didn’t find a lot of reviews online, so I decided that once we got ours that I would do reviews for the first few nights of sleep, and then update every so often. We started thinking about getting a new bed after we stayed at her parents’ house and slept on their memory foam bed– we both had one of the best sleeps we could remember. Shortly after that I posted in an ‘AS support’ Facebook group to get a poll to see what other mattresses ‘ASers’ used. The general suggestion was memory foam, but here is the list of brands, etc. that were recommended: Tempur-Pedic (cloud); Sleep Number’ Select Comfort (with 4″ memory foam mattress topper); Craftmatic; Servant Icomfort Series (which is supposed to be cheaper than Tempur-pedic; and Kingsdown Belgigue Trilum.

A Return

I have not been around for quite some time. I have been back in school since September 2013 working on prerequisite classes: Human Anatomy, Statistics, and Human Physiology. All of these course have been very heavy and my focus has been solely on them and not much else. However, I have thought of this blog often.

I have a number of blogs planned and I’m excited to get back into this. There have been a few times that I have wanted to pass along the link to this blog as a help to others; however, it has been so long since I have posted on it I was ashamed to pass it along.

Since September I have put my body through an incredible amount of stress and seen the impacts stress has with autoimmune; I have felt my pain increase; I had a flare-up of irits; I have been generally less happy and really not much like myself. But, recently I was given the gift of time: my girlfriend has taken on all of our bills, which has allowed me to take a leave of absence from work. With this extra time I will now be able to focus on my school work more, and focus on taking care of my mind and body as well. Part of taking care of my mind will be revisiting this blog. Sharing my experiences, being accountable, and posting about things I have learned.

I realize that the few readers I may have had, have probably moved on, but I must start somewhere. This is just an initial post to get me back into the groove. I have plans for more, and I hope I can reach out and share with others again.

Stay Loose!

Support

Support is one of the greatest gifts you can give to anyone living with AS or any chronic condition. My Girlfriend has been the most influential person and the most supportive person in my life. Throughout this blog I will be referring to her and the amazing support she has been for me. Recently, I posted a link to her blog discussing our diet, which is just one of many things she has done for me: adopting a gluten and dairy free diet. This is a picture of our yoga mats side-by-side, which was after an evening of stretching we did together– she has been so encouraging of me starting a regular stretching routine.

My girlfriend has also encouraged me to maintain a sleeping routine which has been incredibly beneficial. She has a great knowledge of medications, nutrition, and ‘going green’. Her blog focuses on our journey to become more green. For years I have wanted to cut down on the chemicals I expose my body to, and she has made that process so incredibly easy for me: she does all the research, and I reap the benefits of it! Reducing the chemicals I’m exposed to can only help to reduce the autoimmune! She has also attended a few of my Rheumatology appointments and been there to help encourage and support me through a variety of drug trials and sicknesses that I’ve encountered. She has seen me through my highs, and lows over the past 10 months. I cannot emphasise enough the incredible impact she has had in my life, and I would be where I am today without her.

My girlfriend believes in me and encourages me to look forward to things. Before we went to Costa Rica we had a number of conversations all starting with me feeling uneasy about doing a trekking tour with my health the way it was. She reassured me that she knew I could do it, and if for some reason I couldn’t, she was willing to rearrange the details of our trip to accommodate me. I felt so at ease, and so accepted. And, this past week she has been talking about rock climbing– something that is a great passion for her, and something I have expressed interest with. I told her I wanted to try, but the RA has made my wrist and ankle quite weak, and so I have put it off until I’m stronger. She responded that those things would just be issues I had to problem solve– like her having to problem solve her height, etc. See, she’s super supportive!

My family and friends have been a great support too! Everyone has been on-board with my modified diet, and is always asking about how I’m doing, and wanting to accommodate me wherever we go. At times this makes me uncomfortable, but I know they care about me and are just trying to look out for me. Also, earlier this year I sent out a message to family and friends to see if anyone would be interested in joining a team I created to do the Walk to Fight Arthritis in my local city. I had a great response from those who donated financially, and from those who came out to walk with me. This is our team: 

I do not have everyone’s permission to post his/her image, so I was a bit creative. These are simply representations and fictitious. Any likeness or resemblance to any real persons, living or dead, is purely coincidental.

Together we raised close to $1500 CND for arthritis research and programs and did the 5km walk. I was happy to support the Arthritis Society because they provide many great, and free, workshops for those living with arthritis.

If you know anyone living with a chronic condition, your support is the greatest gift you can give to them.

Stay Loose!

Day-By-Day

For the past month or so I have tried to stretch each day. I was doing so well for about three weeks in August, but since then I have been a bit inconsistent. I started this process with an app called Daily Insist that I downloaded on my iPhone as a free app. This app allows you to set up a habit you would like to create and provides you with time-frames to continue your habit for– 7, 14, or 21 days. You can also set reminders for you to complete your tasks and it keeps track of your progress:

Arthritis Awarness Month

I have been a bit absent lately. But, with September being Arthritis Awareness Month I hope to be more present, and I think it is important for all of us to help raise awareness and support for those living with all forms of arthritis. The Canadian Arthritis Society is posting this month on their website so feel free to check them out. Post, below, any additional resources you have and spread the word!

Bye Bye Predy

Today is a very exciting day: I have finally titrated off prednisone. I have been on this medication since January 2013. I am slightly nervous because each time I have halved the medication I have had a few days of pain in my affected joints: wrist, ankle, and s.i. joints. Today, I am going from 2.5mg/day to 0mg/day– so I guess that’s not halving, but each time before I have halved the dosage. I have been very lucky that I have not had any of the typical ‘steroid’ side-effects while on this medication: round face, water retention, weight gain, etc.

I have not been pushing to be off this medication because of the possible side-effects, but rather the fact that as I begin to titrate off of all my medications I will hopefully be able to reduce the dosage of methotrexate I take and return to the pill form rather than the subcutaneous injection, which makes me ill every week.

My Rheumatologist wants me to begin to remove items from my list of medications, and I had to start with prednisone because there can be complications with staying on a steroid for so long. Removing prednisone drops my list of medications to five because I’m also stopping Esomeprazole (I was taking this to help protect my stomach lining)– which means only three different types of pills to take each day, and two injections. The next medication to go will be arthrotec, but it will be a little while before I begin to titrate that one because I want my body to have some time to adjust to not having prednisone everyday.

Bye Bye Predy!

Traveling With AS

When traveling with AS, or someone who has AS, certain accommodations will need to be made, and addressed– I seriously struggle with this, but it is a reality. I struggle with this because I don’t like feeling different from other people, or that I cannot do what a ‘typical’ person can do. I realize that this thinking is grossly generalizing the abilities of people, but I really want to be able to go camping, and not worry about having a sore back from sleeping on the ground. I want to be able to carry a pack and do trekking tours and not have others worry whether I am able to continue. It’s also frustrating to have to put so much focus on meds when traveling: making sure I have enough to cover me– in the event something happens– or to plan times around my meds. For example, now that I’m on biologics, I will need to consider how a vacation may fit around that injection: it’s very expensive, is supposed to be taken on the same day each month, and needs to be refrigerated– these are all things that become a focus when traveling.

Learning About AS

I was diagnosed with Ankylosing Spondylitis in August 2011. Earlier that year I had a terrible bout of Iritis, and because of my family history, and the recent morning stiffness I had been experiencing in my lower back, I was encouraged to have the HLA-B27 blood test for the genetic marker for AS.