Wednesday, August 24, 2011

You know what the say about best laid plans...

When I first became unwell all I wanted was a diagnosis. I was convinced that once we had a diagnosis I would start treatment and have my life back! It was a simple enough plan so I should have known that it would not go accordingly.

I am now receiving treatment for my Hashimoto's (auto-immune hypothyroid), Fibromyalgia and Rheumatoid Arthritis. The medications make me sick. The chemo and antimalarial medications for the RA are the most vial medications going. The methotrexate  (chemo drug) leaves me bedridden for at least 2 days after I have taken it and another 2 days for me to feel okay. This is on top of always being tired, in pain and various joints swollen and not working. Also, can't forget the brain fog which seems to be worse with these medications. So three days with the usual complaints and then we get to start the madness all over again.

I am more than my illness but my illness takes so much out of me it feels like there is little else left. I am sick and tired of sick and tired.

I saw an OT yesterday from the Arthritis Society. I need custom bilateral resting hand splints to sleep in at night. To prevent my hands from balling into fists, making them so stiff that it can be hours before I can straighten them in the morning. The wrist splints to wear during the day to support my wrists when they are sore or I am working on the computer. I need to see my Dr. to get prescriptions for these so that insurance will cover the cost. I have been given hand and shoulder exercises to help keep my range of motion in my joints. I get frustrated because I cannot get my fingers into the proper positions for many of the exercises. The OT is hopeful that with time I will regain that ability. Right now it is just frustrating.

It is wonderful to use this blog to express what I am feeling and going through. It helps immensely to be able to get it out. It will also be able to hopefully to show my progress as I come to terms with my diagnosis' and treatment begins to work. Holding out for better days and if you happen to find my sense of humour and positive attitude running amok please send them back to me, they are dearly missed!

© 2011 Rhonda

Monday, August 22, 2011

A Reprieve

 I have been dreading today since Saturday. As if anyone needed another reason to dislike Monday's its being time to take your next Methotrexate (chemo drug) dose that will do it. It leaves me so dizzy, nauseated and tired for days which is saying something because I have suffered with chronic fatigue since January and this mediction makes it that much worse for 2-3 days after I take my dose. YUCK!! I woke yesterday with a sore throat and this morning with a wicked cough. Saw my family Dr. this afternoon who said that I had a very bad chest infection so Methotrexate today! Antibiotics to clear this up before I end up in hospital with pneumonia. I am to take antibiotics for at least 3 days before I take the now I dislike Wednesdays...ugh. Unless of course the antibiotics don't do the trick and I am still sick come Wednesday! Time will tell.

© 2011 Rhonda

Sunday, August 21, 2011


 I feel lost in every sense of the word since my official diagnosis at the beginning of this week. I feel the worst betrayal of my life...the betrayal of ones body. A body that I can no longer count on for anything other than pain.

Without a diagnosis I could pretend that since I woke up one day like this that I could magically wake up one day and it would be gone. That I would have my life back. It took 8 months to figure out what was wrong. A short time given how many others I have heard about since I started this nightmare journey into auto-immune diseases. I had always believed that I could deal with any diagnosis that it was the fear of the unknown that was getting me down. Knowing that whatever it was would get better once we had a diagnosis. Of course with a diagnosis I would begin treatment and I would magically be better.

Rhuematoid Arthritis is an incurable auto-immune disease and it is life changing. So many people hear the word arthritis and assume that you are making mountains out of mole hills when it comes to your pain and limitations imposed by this dreadful disease. After all it is just arthritis! Whom ever named this disease got it wrong. Not only are people in general misinformed but so are a number of healthcare professionals. Auto-Immune Rheumatoid Disease seems to be a more apt name for the disease and it at the very least takes arthritis out of the equation and has people ask what it is vs. assuming they know what it is since they have a touch of arthritis in their knee.

This "arthtitis" has decreased my life expectancy by 10-15 years. I have rheumatoid nodules on my lung and it can involve other organs as well. I am at greater risk of heart disease, blood cancers as well as having other organ involvement as well. The medications are nasty. They treat this "arthritis" with chemotherapy drugs and anti-malarial drugs, I then take an additional 3 medications to counter act the side effects of these two drugs. The side effects of the medications outweigh the damage that RA will cause my body. That alone makes me shake my head. Leaving this disease untreated would be worse than the damage I am doing by taking chemotherapy and anti-malarial drugs.

I am unlucky enough to have RA in EVERY joint in my of my body I didn't even know were joints or had never thought of that way before. When my jaw is inflamed it changes what foods I can eat as I cannot chew. When my hands are bad just about everything changes. I can't get up by myself, I can't dress myself: anything with buttons is out of the question, I can't shower myself, brush my own hair, pick things up, do housework, hold items in my hands, write, type, turn door handles, use my cane (which is needed to keep me upright since my knees and ankles give out whenever they desire), drive and most importantly do things with my children. Heck I can't even hold a book to read.

I have learned that my ribs which hurt with every breath are considered a joint of sorts where they are attached to the sternum. We have more joints in our feet than you realize and every single one of them hurts. Some days it is impossible to stand let alone walk. I have given up walking any distance more than 10 minutes. Think about all of the things that that alone impacts.Whenever I venture out of the house which is rarely these days I have to consider if I have what it is going to take. I know that after 10 minutes of walking around I will end up dragging myself feeling more dead than alive. At the end of it all I still have to get myself and possibly my kids if they are with me home safely.

Last year at this time I was up to walking 5-10km daily and swimming 1-3 km daily. I was the healthiest I have been in my life. I was alive and Loving Life!! I can no longer do either of those things. I can't do simple things, things I have done all of my life. Damage is already done and is irreversible.  The only hope I have is that the medications will work and slow down the disease. It will take approx 12 weeks to know if these medications are going to work for me.

Coming to terms with my new limitations is going to take some time. I have to resign myself to the fact that each and every day I will be riddled with pain. I have had days where I know that if not for my amazing family and friends I would not choose to be here. It is hard when each and everyday it takes a few hours to work the kinks out, take stock and determine if there are more nodules, more swelling, more damage and if there are more things that I cannot do today. Each time there is something added to the can no longer do list I cry...yet another loss when will it end? Will I be left able to do anything for myself?

Before January I used to be the person who always saw the cup as half full. I could see the bright side of anything and everything. Today I remain lost. Not knowing what to do with myself, where my life is headed and how I am supposed to approach the future with a smile and confidence. I had a wonderful conversation with my brother who reminded me that I am much more than my physical being. That I am loved for who I am and even if this disease takes my body it can only take who I am if I let it. That in itself is food for thought. I will come out the other side of this capable, confident and positive in myself, my abilities and what I have to offer the world. All things take time and I need to give myself permission to go through the process of getting there without being too hard on myself.

© 2011 Rhonda

Friday, August 19, 2011


 I live for summers. Ever since I was a kid it has been my favourite season. I love the heat and the outdoor freedom that summer brings. Winters are cold here in Ontario and I have never tolerated the cold well. I have often wished that I lived in a much warmer climate that did not have 4 distinct seasons. At the same time I could never imagine leaving Ontario. The Spring sees me come to life and Summer is where my heart is. Fall is a reminder that Winter is around the corner and the cold temperatures, blustery winds and snow quickly follow.

I had hoped this year with being unwell that the warmth and sunshine would help me to feel better. It turns out that I cannot tolerate the heat and spend most of my time indoors with the central air. The heat leaves my legs feeling like I am walking in mud up to my thighs each step slow, deliberate and painful. I feel nauseated and often dizzy with the high temperatures we saw in July where with the humidex it was feeling 110 F. We don't normally see temperatures that hot! August has been more seasonal with temperatures and humidex feeling more like the low to mid 90's F.

My favourite time of year is here and I am unable to enjoy it. It makes me sad. Today the CNE opens which is our signal that summer is almost at a close and kids are back to school in just a few short weeks. Where did the summer go?? I have yet to enjoy it. Perhaps the fall with cooler temperatures will allow me to spend time in the great outdoors without making my symptoms worse. I am looking forward to the cooler days and nights.

Which is your favourite season and why?

© 2011 Rhonda

Thursday, August 18, 2011

Diagnosis - Rheumatoid Arthritis

 Last week was an incredibly difficult week for me on so many different levels. On Tuesday I woke up with 4 nodules, one on each finger on my right hand. Wednesday I woke with an additional 4 nodules in the same spots on the left hand. There is only one disease that produces nodules and happens symmetrically...Rheumatoid Arthritis. By Thursday I woke with even more nodules and my hands swollen so badly that they were stuck in a rather deformed position. Three fingers point downwards and my pinky finger slightly straighter sticking off to the side on both hands.

I learned that I could no longer hold anything in my hands as I was unable to grip, pick up or hold any objects nor was I able to type. If I wanted a drink I had to hold my glass between my wrists. I am unable to turn door handles, get up from sitting unassisted (leg weakness and my knees and ankles give out on a regular basis) as I cannot use my cane because of my hands. The list of things that I could not do over a three day period was devastating. Each time I attempted to do something for myself I was met with failure. I cannot tell you how difficult those three days were. Finally on Sunday the swelling had reduced considerably and I was able to move my hands and hold a number of things again. The weakness seems to be staying and if I so too much of anything the swelling returns. New nodules continue to appear. I am thankful that they are smaller than  most of the pictures I have found of them.

 Saw my Rheumotologist Dr. M yesterday to follow up on the blood work I had completed 3 weeks prior. I knew the diagnosis before I saw her. There is only one disease that produces nodules, pain, swelling and curiously enough on both sides of the body. The confirmation of Rheumatoid Arthritis was given. My anti-ccp blood test was more than twice the acceptable limit and the appearance of nodules and swelling were all they needed to confirm. I was started on some pretty nasty medications one an anti-malarial drug the other a chemotherapy drug and then a new NSAID along with two other medications to deal with the side effects of the first two. Blood work every two weeks, visits with an Opthamologist every 6 months just to be able to take these medications safely. Even with all of these medications to combat the side effects I still feel like I was hit by a truck. I slept for 16 hours yesterday after taking them. I was so tired, nauseated and dizzy bed was the safest place for me. I remain tired, nauseated and dizzy today. I hope there is an adjustment period for the medications and that these side effects go away sooner than later.

Learning all I can about this disease and found a wonderful website/blog that provides a wonderful source of news, encouragement and hope. Some days the depression is really bad. I guess all of these diagnosis (three in as many months Hashitoxcosis, Fibromyalgia and Rheumatoid Arthritis) are taking a cumulative toll. Time to adjust, time to relearn what I can and cannot do and then onward and upward. I will fight this with all I have but I have learned enough that nobody wins the fight.

© 2011 Rhonda

Saturday, August 6, 2011

Answers ... Finally

I have been on holiday for the past two weeks. Sadly they were two very difficult weeks with regards to my health. The up side was not having to deal with work on top of the incredible pain I have been in.

I got a phone call yesterday afternoon to say that some of my blood work has come back and my levels are extremely high indicating sever disease and that Dr.M needs to see me ASAP. However, she is on holidays next week so they are squeezing me in on Monday August 15th (her first day back to work). The receptionist who called me was able to tell me that the blood work indicated either Lupus or Rheumatoid Arthritis but that she wasn't sure which. The Dr. would explain everything to me when I see her on the 15th. So it looks like we finally have some answers as to what is at the bottom of my health issues and found a number of not so nice issues on the way. I am still shaking my head at the fact that since I have been unwell we have diagnosed: Hashitoxcosis (auto-immune thyroid disease), TMJ with a cyst on my brain at the jaw (still need to see my dentist about), 2 lesions on my brain in the white matter (no idea of the cause and they are not too worried at this point but recommend follow up with MRI's annually), Adrenal glad failure, nodules on my lung along with a thickening of the plural of my lung, oh ya, Menopause has begun and Fibromyalgia and believe it or not all of these are side issues!!! The biggest issue will be revealed when I see the Dr. on August 15th and it is either Rheumatoid Arthritis or Lupus. How on earth did all of these happen to me ALL AT THE SAME TIME???

The year before I got sick was honestly the healthiest year of my life. I had lost 32lbs taking me from Obese to a healthy BMI, was walking 5-10km a day and swimming laps (1km daily) in the summer and was beginning a strength training program. I was drinking 8 cups of water each day and eating 5 servings of fruits and veggies each day, I was sticking within my ranges for calories, fats, carbs. I have always struggled with consistently meeting my protein. I was also eating a high fiber diet between 35-45g of fiber daily. Still I had come a long way from where I was. That makes the past 8 months even more unreal and puzzling. I just wish I understood why this is happening all at the same time??

We spent my two weeks holidays doing family outings in the mornings and home and off my feet by the afternoons. I over did it which is perhaps why I was in such bad shape as far as pain is concerned. I ate poorly skipping meals. The new medication is playing havoc with my appetite and to top it all off, I crave is unhealthy foods either salty or sweet.

Back to reality now and work on Monday. I need to get back to tracking my foods and eating healthier and eating 3 meals a day. Waiting till the 15th feels like a lifetime away, that might just drive me around the bend knowing she has answers and I don't! Hopefully with answers comes treatment which will bring some relief to all of this pain.

At least the sleep medication is working but still feeling too dopey in the mornings. Going to try cutting the dose in half tonight and see if that works. Now if only it did something for the pain that it is supposed to treat! I am feeling rather down today, sick and tired of being sick and tired. I need to do something to get myself back on track and finding enjoyment in life again. I am very blessed to have such a supportive husband and children. They truly have been amazing in every sense of the word.

I had the kids at the zoo the other day for a couple of hours. They took turns with the backpack, checked in to see if I needed to sit down or have a drink. When I was clearly fatigued they asked if they could go home. I stared in disbelief and they said Mom you have had enough, your walking slower and we can tell you are in more pain than when we got here. We can come back another day. Thank you for taking us we had fun and we can go home and play and let you rest. Truly amazing kids for 8 and 9! So thoughtful, caring and they make me so very proud.

© 2011 Rhonda

Wednesday, August 3, 2011

Spoon Theory

I had a very dear friend send me a link to something called spoon theory. For the first time since I became unwell I found the words to explain what I am experiencing. For anyone who has an auto-immune disease (Lupus, Fibromyalgia, MS, Chronic Fatigue, Rheumatoid Arthritis etc.) or knows someone who does please be sure to read this. It will help you to better understand and for those who are experiencing it, you may now have the words to explain to family, friends, co-workers and even help yourself to put things into perspective. I cried for almost an hour after reading this. I hope you find as much value in this as I do. With love and understanding

In other news:

I saw my family doctor - Dr. B today for the first time since my fibromyalgia diagnosis by the specialist he sent me to Dr.M. He is pleased to hear that they are continuing to look at Lupus and Rheumatoid Arthritis as be believes I could possibly have both and wants them ruled out. They are both from the Arthritis Family as is the Fibromyalgia. I am not liking the 25mg of Amitriptyline Dr.M prescribed last week but Dr.B is really wanting me to be able to tolerate it. He has told me to cut the pill in half and to take it at dinner time vs. bedtime so that I am not hungover in the morning. He wants me to do that for one week and then to add 25mg of Lyrica at 9pm. These medications are to assist with restorative sleep and to manage chronic pain (their original use was to treat chronic depression but those doses are much higher starting at 100mg) and should get rid of the insomnia. There is a third medication Cymbalta that he will look at adding when I see him again in three weeks. He was at a symposium with a Fibromyalgia Doctor from Lavalle, Quebec just a few weeks ago. This doctor claims that Amitriptyline, Lyrica and Cymbalta along with an exercise program (20 minutes of walking or stationary bike daily) for 3 years will CURE Fibromyalgia in 95% of patients. He is the only Doctor who believes there is a cure and claims of 95% success rate in curing Fibromyalgia. As my doctor said there is nothing to lose by trying.

He also increased my thyroid medication to 100mcg's and changed my pain medication to allow me to manage my own dose as needed within a higher daily range. The pain has not been managed at all in the past few weeks at my current dose/range. When the pain is this bad you cannot think of anything other than the pain and thinking is a strong word considering the brain fog that goes with it. Everything you do seems to make it worse. You cannot do anything including sleep when the pain is this bad. I have never imagined that kind of pain existed. When the pain medication is working, it doesn't get rid of the pain rather it puts it on the back burner. It is always there but not in the forefront so that it allows you to be able to think and focus on other things. It is difficult to explain. I can't believe it is almost 8 months living like this. At least I am beginning to get some answers and to understand what is happening to my body and why I have such intense pain from head to toe. I have not had a single pain free day in all of that time. If Fibromyalgia turns out to not be curable then I will not see a pain free day again in this lifetime. That is a sobering thought. I have to believe that there will be a cure if not today then within my lifetime. I keep reminding myself when I feel overwhelmed like this that attitude is more than half the battle. Staying positive really helps!

Wishing for sleep before 3am tonight. Given the way I feel right now it might just happen :) I am tired of being exhausted, not being able to sleep until the wee hours of the morning and then waking up just as exhausted if not more than when I went to bed the night before.

Have a good night everyone! Here is to sleepy nights and rested mornings.

© 2011 Rhonda

Tuesday, August 2, 2011

Writing Contests

 After some careful research on writing contests I have come up with two that I am contemplating. Labour Day weekend September 3 - 5th, 2011 is the Three Day Novel Contest. You can begin writing at midnight on September 3 and submissions are due midnight September 5th. First prize is publication, Second Prize is $500 and Third Prize is $100. All contestants who submit their manuscripts and have completed the 3 day novel contest are given certificates of completion. What a wild ride that competition will be. Just the satisfaction of completing the contest under that kind of pressure is like nothing else I can think of! Here is the link where you can learn everything you need to know about the 3 Day Novel Writing Contest and of course where you can register! Before August 5th the Early Bird Registration Fee is $50 after August 5th the registration fee is $55

The second contest is much less formal. National Novel Writing Month can be found at Nobody reads your completed work but you are aiming to complete a minimum of 50,000 word novel during the month of November. You upload your word counts daily and if you complete the 50,000 word challenge you receive a certificate and web badge. You must register before November 1st for this contest.

I am so excited and overwhelmed with the idea of both contests that I might just have to enter Anybody out there up for the challenge? Who wants to join me in my madness?

© 2011 Rhonda


Living with chronic pain and fatigue is a challenge. I thought I understood what it is like for others who experience this kind of pain and fatigue. If I were honest, I quickly came to realize  that I didn't have a clue what it was like to live that way day in and day out. It is one of those things that to truly understand you have to experience. I wouldn't wish that on anyone. The most frustrating part for me is that I am a mom to young children. My oldest is 19 but the two little ones are only 8 and 9. They still need me and better yet they are still at an age where they want me! It breaks my heart to not be able to make plans from one day to the next because we don't know how I will be feeling. We don't know how bad the humidity is going to be and blatantly we don't know if I will be physically capable of much more than getting out of bed! My fun factor has taken a serious hit. My husband and kids disagree but even I know the difference.

We play board games in my bed, watch movies, talk and get lost in wonderful books. We still do things like visit the Toronto Zoo. I have slowly been learning to do things differently than I used to. When we go to the zoo, we go for a couple of hours in the morning before the heat gets too bad. We use the zoomobile to get from continent to continent and when needed I can rent a wheelchair. Thank goodness we have a family membership and can go as many times as we would like. This has allowed us to see all of the zoo this year broken up into manageable chunks. I can't imagine being without a zoo membership. We also have an Ontario Science Center membership and the same rules apply except it allows us to go anytime of the day because of the air conditioning. Loving indoor activities in the heat of summer and the cold of winter.

Santa knocked it out of the park last year when he gave the kids the memberships for Christmas. Gifts that are remembered, used year round and do not clutter the house. Those family memberships have done wonders for us this year. I am looking to see what other memberships are available for things that are near by (as I don't travel distances well) and will encourage family activity year round. Mind you these two memberships will be hard to beat!

I have spent many an hour in the past 8 months feeling sorry for myself. My life turned upside down, the pain, the fatigue and not knowing if my legs will work from one day to the next. Having to use a cane to make sure that I stay on my own two feet rather than on my backside. Balance issues can be bad and certainly embarrassing when they occur in public. It is amazing the looks I get when I; use accessible parking (I have a permit), when I walk with a cane or on bad days when I use a wheelchair. I guess it is hard for people to understand when there isn't anything visible to help them understand. I have also become very aware of how inaccessible our city truly is. Again something you only see when you are faced with the challenge of having to get around. Our cities need to consider using individuals who use canes and wheelchairs to get around to be the ones to provide them with information on what is and isn't accessible.

I think the biggest lesson I have learned this year is that I have control over only one thing in my life. Yes, just one thing. My attitude. It is my attitude that makes a difference in my day to day life. I choose my attitude no different than I choose the clothing I am going to wear each day. My attitude affects how I feel, what I do and how I do it. It impacts each and every aspect of my life and the lives of those around me. I choose to see the glass as half full. I choose a positive attitude. I choose to surround myself with positive people that have positive attitudes. There isn't anything that I cannot accomplish if I approach it with a positive attitude.

I truly believe that attitude is half the battle. Once you are armed with a positive attitude you can do anything. Your attitude affects your ability to do everything. There are some quotes that I use to remind me about the value of a positive attitude and it's impact on my life.

"Do or Do Not there is no Try" - Yoda

"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

"You become what you think about" - Earl Nightingale

"To "try" is failure with honour" - Unknown

What does your attitude say about you? What are your favourite quotes that inspire and motivate you?

© 2011 Rhonda