Friday, December 30, 2011

Favourite Quotes

Quotes have a wonderful way of inspiring individuals in many different ways. Over the years there have been a series of quotes that have stood the test of time and helped me to find strength I needed to carry on. I thought these might be a wonderful way to end the year and to prepare for the upcoming year ahead.

God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference!- Unknown

Destiny is not a matter of chance, It is a matter of choice, It is not something to be waited for, But rather something to be achieved. - William Jennings Bryan

Be the change you want to see in the world - Mahatma Ghandhi

Dream as if you'll live forever. Live as if you'll die today - James Dean

When the student is ready the teacher will appear - Buddhist Proverb

Minds are like parachutes they only function when they are open - Thomas Dewar

You become what you think about - Earl Nightingale

To "try" is failure with honour - Unknown

If it is going to be, then it is up to me - Unknown

Some days your the dog, some days your the hydrant - Unknown but makes me smile

Worrying does not empty tomorrow of its troubles…. it empties today of its strength. - Corrie Ten Boom

Worry is like a rocking chair, it gives you something to do but you don't get anywhere - unknown

I hope that some of these quotes are new to you and add some strength to your day. ((HUGS)) Thanks for sticking around through this crazy year. There will be one more post this year (so I had best get to it) for a blog carnival that RAWarrior is holding on pain. After that I will see you on January first with my first of 30 blogs for the month. There seem to be a few of us out there with this in mind. Perhaps I will hook up with one of the challenges that is going on which will help with making sure I don't run out of topics :) Have a great day!

© 2011 Rhonda

Christmas & Health

 The house is quiet for the first time in a very long time. My husband and children have headed north to spend the day tobogganing with my husbands oldest daughter, her hubby and of course our grandchildren. I am sorry to once again stay home but I just don't do long drives very well. Not to mention it is one day where they can escape my illness and not have to consider my ability into their planning. It is a day away from illness :) I wish I could take a day away from it but that is not very likely to happen. I suppose if I got on the right mixture of medications it is possible but that just feels like a dream at this point in time.

Christmas was WONDERFUL and I am so pleased to have little ones who make the season that much more special. They declared this the BEST CHRISTMAS EVER and do so every year! They were so appreciative of all of their gifts, our Christmas Eve family get togethers and Christmas Dinner with my parents, brother and nephew. Now the excitement is for New Years Eve. They want to have a What this means is my parents over for the evening to play cards with my hubby and I. If you have anyone over, and there is food and snacks it is a I wonder if I will last through the evening playing cards. I sure hope so. Mind you my mom is quite sick with a chest infection right now so not even sure they will make it. If not the four of us will bring in the new year playing games.

Santa once again provided our family with year round passes for the Toronto Zoo and The Ontario Science Centre. This two passes will be great with home schooling the kids. We get to have field trips too :)

My hubby scored big points by purchasing me a kobo vox which is a tablet / e-reader. This is solved my issues with not being able to hold my books or turn pages. I can read again and that is such a wonderful gift. My kids were so impressed with my e-reader they used their Christmas money and saved up allowance to purchase their own! I love that I have instilled the desire to read into my children. Reading is a truly wonderful gift. It can transport me into another world where I can be distracted from my pain even if only for a little while.

As for a health update - I have not been doing very well these past few weeks. I am so glad that all of my shopping was done early this year! My Rheumy is very concerned about my lungs and ordered a lung CT. The last one I had in May before my diagnosis noted nodules and a thickening of the plurel of my lung. Now that we know I have a severe form of RA it is assumed they are rheumatoid nodules on my lung. She believes I have what is called Rheumatoid Lung. If that is the case I won't be able to take biologics, methotrexate and a host of other RA meds. If I understand correctly I will be down to just pain meds and the RA will run rampant without any medication to slow it down. This is a very scary prospect as I wait for my results. I will see my Rheumy on the 20th for the results which feels like a very long time from now. I know it isn't but if my lungs are as bad as my rheumy suspects then I am in for a very painful future. That is overwhelming when I am having such a difficult time with taking RA meds. I will try not to wallow in what could be and stay focused on the here and now but I won't lie it is difficult.

I have been giving a lot of thought to 2012 and what I want to accomplish. On the bright side I have learned what is wrong with me and I am being treated by a wonderful Rheumatologist who will do her best by me. I may or may not be able to continue working in 2012. I will continue with homeschooling which is so very important to me and my children. I have always wanted to write a novel and now is as good a time as any to make that happen. I have decided that NaNoWrMo is too fast paced for the unpredictability of my illness. I signed up and failed miserably with another difficult month with my RA. So this time I have a plan: I will spend time in January writing my outline and on character development and I will take it from there. I am in no hurry and will take my time to make this happen. It has been a life long dream and it is time to make it a reality. My other goal for 2012 is to dedicate more time to this blog and hopefully adding something of substance back to the RA Community. I am going to aim for 30 blogs in 30 days and see how that goes. Perhaps I can bring the subscriptions to this blog up from the single

What are you goals for 2012? Do you make resolutions? Are you able to stick to them? I would love to hear from you.

© 2011 Rhonda

Wednesday, December 14, 2011

Christmas 2011

It is amazing but it has taken chronic illness to get me organized around Christmas. Every other year I am still out there a week before Christmas and I am up wrapping gifts into the wee hours of Christmas morning. This year I was done all of my shopping by the end of the first week in December and last weekend my kids spent the night with my mom and dad and I got all of the gifts wrapped...AMAZING to say the least. I have paid the price for all of the wrapping with hands that are extremely sore, swollen and refusing to work properly but I am done and now I can relax between now and Christmas. Not being stressed out over the holiday is very much worth it!

Had it not been for on-line shopping I would never have gotten any shopping done. I actually only physically had to go to two stores and I new exactly what I was getting so it was an in and out. I cannot walk for more than 20 minutes and then I start to drag and if I continue on I have to basically be carried out of the store. Thank goodness for shopping buggies that one can lean on to keep them moving. If I stand still for more than 5 minutes my feet begin to burn. This gets in the way of standing in line, cooking, doing dishes etc. The burning pain is the kind that takes your breath away it is so painful.

This weekend it is my youngest daughter's 9th birthday. She was an early Christmas gift and now she is growing up so fast. I am so happy to have the kids home for schooling and the gift of this time with my kids is more valuable to me than anything else could be. While we are celebrating my daughter's birthday this weekend we also have my step-daughter, son-in-law and two grandchildren here to celebrate Christmas with. It is going to be a whirlwind Christmas Celebrations that last weeks rather than a single day. It is a wonderful, joyous time of year and I try very hard to enjoy and let myself be distracted from the pain. Not so sure that is possible this year but I will do my very best!

The gifts are purchased and wrapped. Thanks to my husband, children and my parents the house is decorated and the tree is trimmed. All that is left is cleaning the house to be ready for company. I am truly blessed to have all of the amazing support that I have. My family is truly remarkable and there for me in each and every way possible. Sometimes I decline their help because well I am stubborn that way. I have been forced to give up hosting Christmas dinner for my family, my parents and my brother's family and the occasional friend who has nobody to spend the holiday with. This year my mom and dad are taking over and hosting Christmas Dinner. It will be so strange not to have a turkey in the oven early Christmas morning. I am sad that I won't be hosting this year. It is just one more thing that these damn diseases have taken from me. I tried to insist I could manage but we all know the reality if I try is that I will spend the following week at a minimum in bed recovering from over doing things. So I will behave, purchase the Turkey for my mom and dad and be grateful that I can enjoy a wonderful Christmas dinner with family without over doing it!

This truly is my favourite time of year! The lights on the Christmas tree are my favourite and I love to sit in the evening with all of the lights out other than the tree lights and I just enjoy. The happiness of children as they purchase gifts for their loved ones and when they receive gifts that people who loved them chose with care. Spending time with loved ones where nobody is in a hurry to be somewhere else. It really is a wonderful time of year. Now if we could have a nice blanket of snow Christmas Eve it would be perfect!

What are your family Christmas traditions? How will you spend Christmas this year?

© 2011 Rhonda


We are now into our fourth week of homeschooling. I love seeing the changes in my kids. The confidence, starting to take risks again and self esteem are all slowly returning from non existence. Wanting to work longer and harder. They are having fun learning and are feeling better about learning in an environment where they are safe to make mistakes. They are not teased, not called stupid and not embarrassed by being called upon and they get the answer wrong. Everyone makes mistakes and it is making mistakes that helps us to learn. Mistakes are slowly being seen as human and not a big deal. When we first started schooling from home they were afraid to speak their thoughts out loud for fear they were wrong. With encouragement they began to share and they even began to encourage each other. It has been a really rewarding experience.

The kids actually have asked to do more work when we are finished for the day. They  have asked to work ahead. There are kids who hated homework and now they don't want positive learning to end. I never thought I would see the day and it has happened so quickly that I am truly amazed. This is truly a wonderful experience. I have some days were I am so totally unwell that I teach from bed but that doesn't take away from anything. In fact my children are also learning compassion for others.

I am so very proud of who my children are as individuals. They are both wonderfully creative and fun. We are lucky parents indeed.

© 2011 Rhonda

Wednesday, December 7, 2011

Health & Homeschooling Update

 So much has happened since I blogged last I don't know where to begin. I have not been doing well hence my absence.

I have a new Rheumatologist at Sunnybrook hospital and she is AMAZING. She actually listened to me for two hours in her office. Just the two of us with no flunkies (students/interns) to be seen. She did a through examination. She asked me where my meds were fore my Raynauds and Sjorgens. I told her I was not diagnosed with either of those things hence no medications. She then diagnosed Raynauds Phenomenon and Secondary Sjorgens. Two and a half weeks ago I had a lip biopsy to confirm the Sjorgens. This is rather painful as the section they removed for the biopsy is right at the base of the gums on the inside of your mouth and the stitches rub every time you move, chew or breath. Not to mention that my mouth is even drier than usual.  He also had me spit into a cup for a period of 20 minutes and was very concerned when he saw that I only had less than 1ml of saliva. I worked darn hard to get that much for him. My mouth is so dry that I cannot eat without a drink. If I try to swallow food without a drink I choke. I am often scared as my mouth seems to have forgotten how to swallow on occasions. Eventually I will swallow but this happens when there is nothing in my mouth other then very small amounts of saliva. Insanely scary when it happens.  The biopsy was completed by a Dental Pathologist and confirmed the diagnosis. He also confirmed that I had RA in jaw joints and the lump on my lower left jaw is a nodule. I couldn't believe that considering it is the size of a golf ball and all of my other nodules are rather small in size.

My new Rheumy also ordered: blood work, hand feet and chest x-rays, Doppler testing on all my extremities, an ophthalmologist appointment to review my eyes (check up since I am on Plaquinil and because of the Sjorgens) and a pulmonary function test. She increased my methotrexate and said she would see me again in three weeks. Hopefully then we would have the majority of test results back so that we could make treatment decisions.

In the mean time she also wanted me to quit smoking! I have tried several times a year for the past three years. I have tried hypnosis, medications, laser, acupuncture, cold turkey and anything and everything there is out there. I have not achieved success or anything close to it. Heck I can't get past day three, so for her to say it like it is an easy thing to do quickly is almost laughable. I will try and figure out a way, but honestly the chemo that they put in my body is worse and more harmful than smoking...but I still need to quit. Just not sure how or when. I am so stressed being chronically ill, still getting over pneumonia, in chronic pain each and every day just does not lend itself to success. Any ideas would be greatly appreciated but please no lectures.

Due to having Raynauds I've been told that I can only where  socks that are 80% + silk. While light weight they will keep my feet warm while wicking away sweat which is what makes most people's feet cold winter. I have also had to eliminate caffeine for my diet and I have to quit smoking . This means caffeine free soda, no coffee or tea and worst of all no chocolate! As if all of these autoimmune diseases aren't enough they want to take away my chocolate too... Just doesn't seem fair few asked

The other exciting thing that is happened since I wrote last is that I am now home schooling my son and daughter. This has been a wonderful learning experience for all and the transition for the most part has gone well. I am quite sure come January that we will have a wonderful schedule worked out. While we are on week three, I have had an extraordinary amount of tests completed with having a new Rheumatologist. It really has been a crazy few weeks. Mostly we have focused on: math, language, reading and writing. come the new year we will add social studies and science. I have also found a wonderful artist whose studio is about 15 min. away and the kids will be taking weekly art lessons. Week one will be pencil drawings, week two will be pottery, week three will be watercolors and the final week will be the children's choice.

It is been interesting to learn what teaching styles my children learn from the best. This also varies by subject, you know just to keep it This is been a wonderful opportunity to spend time with my children while working closely with them to achieve their educational goals. To watch my son on a Monday throw temper tantrum ( like I haven't seen since he was two) because four digit addition with carrying was too hard. He declared that he didn't get it last year and he was never going to get it so I should forget about it and leave him alone! I reminded him that learning new things depends on two factor's 1) the teacher and 2)his attitude. I agreed and four digit addition equations were hard but that I also believed that he was very capable of doing things that were hard. If he changed his attitude and believed that he could do it then I promised to never give up and that I would continue to find new ways to teach him until he was successful in learning how to do those types of math questions.  By Wednesday his self-confidence was through the roof! He challenged me to come up with longer and longer questions. Eventually we wrote a 33 digit math question on the whiteboard that he completed correctly for his dad when he came home from work. Seeing the change in his self-confidence was what made me positive I had done the right things by pulling them out of school and deciding to homeschool. All three of us are very happy with our decision. Oh ya so is my husband :)  It is going to take some getting used to but I am sure once all of my tests are out of the way and the Christmas season is over that we will settle into a nice routine to see out the school year.

I saw my wonderful new Rheumatologist today. she confirmed I have permanent damage in my fingers and toes from the RA. For the first time my CRP levels are high. Up until today the only test that showed/confirmed RA was the anti-CCP. She said that it is very clear that I have severe and aggressive RA. She is concerned about my lungs and therefore did not increase my methotrexate again. She added an additional DMARD called Sulfasalazine which I will begin tomorrow. Apparently when it comes to RA it is the combination of three DMARD's or two DMARD's and a biologic that has the greatest success rate in seeing improvements in RA patients. If my pulmonary function tests and my chest x-ray come back with any concerns than she may discontinue my methotrexate and she may or may not be able to proceed with biologic treatment. This has me worried but I'm trying very hard not to think about what will happen if I can no longer take my methotrexate nor biologic treatment. I keep reminding myself that worry is like a rocking chair it gives us something to do but it doesn't get us anywhere.

On the brighter side thanks to online shopping I have completed all of my Christmas shopping. Just waiting for all of my deliveries. This gives me a couple of weeks to get everything wrapped and ready for Christmas Eve. I am very much looking forward to Christmas, it is my favorite holiday. Thanks to my wonderful husband, children and parents my house and Christmas tree have been decorated.

Are you ready for Christmas? What are your favorite family traditions? I know the next few weeks will be busy but I promise to do my best and check in with a couple of posts between now and Christmas.

Thanks for reading and I look forward to hearing from you!

© 2011 Rhonda